Tuesday, October 31, 2006

Day of the Dead

He grimaces with pain, tears streaming down his face. My psychologist colleague and I sit with him and his wife quietly.

"I fight with the Devil in my thoughts. I hear voices. So many things...." He sobs. His wife confirms his suicidal ideation. The patient shares some trauma history with us, the memories of which could very well explain such psychic pain.

"You know", my colleague says gently, "sometimes when we're sick, and we have alot of time to lay in bed and think, memories come back that we might otherwise suppress."

He watches her intently.

"Those memories surface, and then we're faced with the pain all over again, pain that we might not be able or willing to bear."

He cries again.

This man, once robust and working 6 days a week despite his many chronic illnesses, was always barely able to make time to see me every few months due to his schedule. Now, he is a shell of what he used to be, signs of damage everywhere. He has been so battered by his physical health, and now his psychic and emotional and spiritual well-being are significantly compromised.

Our patient and his wife take their leave, she pushing him down the hall in his wheelchair.

My colleague and I look at each other, sigh, and move on to the next patients waiting for our attention.

Yes, it's Hallowe'en, the Day of the Dead. Many ghosts come out from under beds today, skeletons rattle in closets, as the veil between the worlds grows thin. It seemed like our patient was grappling with forces beyond his ken today, speaking of devils and voices and the haunting of his mind by unseen forces.

The sun goes down, the streets darken, and I wonder who else out there tonight grapples with such demons, as children dressed like devils and witches roam the streets.

I think of the small plaque that sits in the therapy room where we met with our patient. It reads: "And in a cruel age, I will sing of kindess" (Alexander Pushkin).

May choruses of angels sing of kindness this night, and may all those in need be blessed to hear their song.

Friday, October 27, 2006

Flu Flurry

The flu vaccines have arrived, and the flurry of vaccination has begun. Sore shoulders and fears of needles are the notions of the day. Hospitals and health centers practice "force protection", vaccinating employees against illness and lost productivity, unless, of course, the vaccine itself lands said employee in bed for a few days, a small price to pay for the ultimate avoidance of full-blown flu.

In the media and beyond, warnings and predictions of a pandemic loom large, some epidemiologists predicting an eventual worldwide scourge that will dwarf the death and destruction of 1918. Although this may eventually occur, it seems best as a healthcare provider to focus on the here and now, teaching self-care, hygeine and handwashing, protection of family and friends, and avoidance of those who are acutely ill. My immune-compromised patients are the ones for whom I am most concerned, as well as my patients with severe respiratory disease.

There is a certain panic that overtakes a segment of the population as the shipment of vaccine is inevitably postponed by the Feds. Even this year, despite previous experience, we received a small shipment which quickly disappeared, followed by utter silence from the Department of Public Health, leaving us in complete ignorance of the arrival of subsequent shipments.

In a recent post, I prayed aloud that the season's supplies of flu vaccine would flow like "champagne at a wedding". While the supply is not yet intoxicatingly large, some 400 doses arrived to the clinic this week, fifty of those routed to our office for vaccination of our "most vulnerable" patients. Who, then is "most vulnerable" among our caseloads? The 35-year-old with completely suppressed AIDS who has a fully reconstituted immune system or the elder with diabetes and COPD? Is it the schizophrenic with hypertension and daily contact with 100 others at a day program, or the morbidly obese homebound woman with asthma? These are rhetorical questions, obviously enough. They're all "vulnerable" and should all be protected to whatever extent we can do so. Hopefully, the supply will be abundant, and everyone who wants a vaccine will receive one forthwith.

In terms of planning for a pandemic, workshops and municipal plans abound, and I belong to a local group of trained volunteers who can set up a mass distribution site and vaccinate thousands in the span of a few days. Still, if people are going to get sick, there's just no stopping it no matter how many workshops we attend.

So, we do our best, jab as many people in the arm as we can, cross our fingers, and hope to survive this flu season unscathed.

Monday, October 23, 2006

Medicare Part D(uh)

Within the confines of our current state at my work-place, the patients of the program for which I work can only have Medicaid. Once they receive Medicare, we have been forced to cut them loose, the lucky ones over 65 making their way into our program for that population. But at times, some fall through the cracks, and then comes Medicare Part D, otherwise known as Medicare Part Duh. And all hell can break loose.

When someone becomes eligible for Medicare, we all now know that they must sign up for a Medicare Part D drug plan or face financial penalties. The Feds seem to enjoy creating these labyrinthine and ludicrous scenarios which penalize and confuse the huddled masses. The United States of Sadism.

As a case in point, just today a patient rolled into my office in his electric wheelchair. Physically disabled, with major depression and a anxiety disorder, this kind and soft-spoken gentleman needed my assistance. The fact that he is no longer "my patient" on paper means nothing to him, and just as little to me. He explains that he understands that he has new drug coverage and demonstrates this by showing me his new Medicare Part D Prescription Drug Plan card from a company which shall remain anonymous (to protect the guilty). He continued to explain that the pharmacy where he always fills his prescriptions has informed him that he now must pay $74.85 for his one-month supply of BuSpar, a medication for anxiety that he has taken for years. I look at the 1-800 number on the card and sprint to my desk.

"Customer Service, may I help you?"

"Yes, one of my patients is being denied a crucial medication and cannot afford the $85 to pay for it. If you don't help me, I'll reach through these phone lines all the way to California and strangle you." (I paraphrase here, obviously.)

"Well, I'm sorry to hear that, but this patient, or should I say 'member', has a $250 deductible which he must meet before we will may for any prescriptions. He will then have a monthly premium and co-pays for each prescription. Is there anything else I can help you with today?"

"Do you mean that this 65-year-old man who worked all his life and now lives on a fixed income in subsidized housing must come up with $250 to make a deductible which is impossible for him to budget for?"

"Uh, yes, I'm afraid it does." Then an uncomfortable silence on the other end of the line until he says, "Is there anything else I can help you with today?" (As if he had truly helped me with anything.)

"Yes, please give me your home address and phone number so that I know where to direct the hate mail." (I didn't really say that, folks. I just hung up on the heartless managed care bastard who seemed to lack an ounce of compassion.)

Hanging up and putting my head in my hands, wondering how to explain all of this to my patient, a small nightlight-sized bulb went off in my head. As of the 1st of November, my dear patient who is currrenty in Managed Care Purgatory would be eligible for coverage under our program for people over 65 with Medicare! We would essentially become his payor and our nurses would then make all of the decisions about his coverage and medications, with no premiums or copays! (Sounds like a Communist conspiracy to me, Senator McCarthy.) Relief flushed through my veins like so much Bombay Sapphire Gin on a warm summer evening.

Shaking off the thought of a gin and tonic, I rummaged through the meds which I keep in a locked drawer for some of my patients, successfully "borrowing" fourteen 30mg BuSpar tablets from another patient. ("She'll never miss 'em!") But seriously, this gentleman will pay her back, so to speak, when he gets his next supply, and no one will be injured by the transaction. Another flush of relief. Shall we have another drink?

I press the small bottle of BuSpar into my patient's hands, his eyes smiling, my anxious perspiration drying, and we both take a deep breath knowing that we have subverted the dominant paradigm of Medicare Part D(uh) once again. Like my patient who was denied a walker by Medicare because he already has a wheelchair (did you hear that, Orwell?), this patient's only hope of skirting these insane rules and regulations is to seek shelter in our little program which ducks those guidelines and gives the people what they want at a price they can afford, and we have great clinical and economic outcomes, to boot. What more could a Medicare actuary ask for? (Well, deductibles and co-pays, for one, not not mention pricey premiums......)

Folks, I wish I could share with you the secret to what we're doing, the address of my company, and how this practice can be replicated throughout the land, but we just aren't there yet and I must still remain "geographically anonymous". But rest assured, this new breed of "managed care" certainly has a future, and if those actuaries would just get out of our way, maybe we'd be able to fulfill our mission and roll this new model of care out to the rest of you. Until then, keep fighting the good fight, and know that in many corners of this country and the world, brilliant minds are strategizing and conjuring ways to continue to stand this government's duplicitous and worthless schemes on their head. Millions suffer due to their incompetence, and until we think outside of the box---or forget the box altogether---we're trapped in a world we never made.

Gin and tonic, anyone?

Sunday, October 22, 2006

Anticoagulation Blues

Some of you nurses out there might have the responsibility of following patients who are on Coumadin, a powerful blood thinner used for many different clotting disorders. If you do, then you might understand the challenges posed therein, as well as what I call The Anticoagulation Blues.

This form of the blues occurs when a prudent and earnest nurse attempts to manage the care of a patient on coumadin who does not follow protocol. Such is the case with "P", a patient who has suffered from chronic deep vein thrombosis for more than ten years following an accident. This individual has more than once presented at the ER with leg pain and swelling, a subsequent Doppler ultrasound revealing a clot running from the instep to the groin. One small piece of that clot breaking off and travelling to the lungs would kill this person almost instantly from pulmonary embolism.

When tracking a patient on coumadin, it is necessary for several things to happen. For one, the patient must come in for timely bloodwork on a regular basis to have a PT/INR drawn, a test which shows the relative coagulability of the blood. Without this test, we cannot determine how "thin" or "thick" the blood is, and the patient runs great risk of either developing a life-threatening clot or life-threatening spontaneous bleeding. Once the test is drawn, it's necessary that the patient be available by phone for detailed tweaking of his or her Coumadin dose, and then must understand and implement the dose changes advised.

Enter P, stage left. This patient's phone is always busy or off the hook, or there's no answer. No matter how many times I've said, "You must take responsibility and call me for your results---it's your body", this person just can't seem to grasp the gravity of the situation. No matter how much I plead, admonish, or cajole, I still chase this patient down each week, and pray to God that nothing bad has happened when I can't get through. Just this weekend, I ended up calling six times on Saturday, finally reaching my patient today (Sunday), confirming Friday's results and the subsequent doses for the next three days. It's a distressing dance, this business, and the Anticoagulation Blues have me firmly in their grasp. So, strike up the band---a basic blues progression, if you will---and sing along. F-minor's my key.

My patient won't call
Or answer her phone
I'm here at my desk
with results all alone

She might bleed or clot
or just up and die
and then if she did
her fam'ly would cry

They'd blame me for this
and sue us all quick
and I'll lose my license or maybe feel sick

It's a sad story yes
You must really agree
It's a bad way to go
from a big DVT

Anticoagulation Blues
have got me again
coumadin on the brain
coumadin's not my friend

So if you're a patient
who needs this control
make sure you do what
by your nurse you are told

Or down you will go
clutching your chest
gasping for breath
to meet your (here's the big finish) untimely, unseemly, and completely avoidable

Saturday, October 21, 2006

300 Million

Much fuss has been made about this magic number, 300 million, in terms of the population of the United States. Allegedly, according to the Census Bureau, we reached this noteworthy number just last week. According to the statistics, we have seen 30% population growth over the last 40 years, 60% of that growth being from births, the other 40% being due to immigration from abroad. 300 million---that's a big number.

So, what does it really mean? How does it effect me? Some commentators I heard on the radio noted that it means longer lines at Starbucks and busier streets. Waiting an extra three minutes for coffee at my local cafe (NOT Starbucks!) is really the least of my worries.

From my perspective, there are many meanings and reverberations of this massive population growth, and this is in no way an exhaustive list, by any means. To wit:

---increasing numbers of those living in poverty
---more children going hungry
---more Americans without health insurance
---an inadequate healthcare infrastructure to handle such growth
---more unchecked pedestrian-unfriendly development and sprawl
---more market share for Wal-Mart
---more gas stations, more banks, more delivery trucks, more congestion
---more people to whom corporations can peddle their unnecessary wares
---an exponential growth in the number of cars on the road
---more poor and working class people for military recruiters to target
---a devastatingly corpulent Military-Industrial Complex
---a further shortage in space in colleges and universities for worthy students
---increasingly crowded emergency rooms
---an exacerbated shortage of nurses and nursing faculty
---a riotously damaged environment
---a growing Prison-Industrial Complex
---further decimation of open space and farmland for unchecked development
---more schools that the federal government will not adequately fund
---more children left behind by the "No Child Left Behind" Act
---further demographic shifts into the sprawling suburbs
---the continued decline of numerous American cities
---more people for the government to exploit and deceive
---more intolerance of new immigrant populations and their needs

If I have left anything out, please do chime in. While I welcome new citizens and new babies entering the world, I simply see this country as inadequately prepared to support such growth at this time in history. While we can't (and should not) artificially stem the tide of births and immigration, we should, in my opinion, focus on developing strategies and methods for accomodating this expansion of the population judiciously and intelligently.

We need better funding for schools, legislation to curb sprawl and encourage "smart growth", wider use of renewable energy sources, clean mass transit, universal healthcare, universal access to higher education, low-interest small business loans, government subsidizing of nursing schools and nursing education, increased federal subsidies of student loans, expanded government stipends for healthcare workers choosing to work with vulnerable populations, more affordable housing, a narrowing "Digital Divide", job training for those unable to enter college, improved reentry programs for those leaving prison. I could go on, but you get the picture.

Yes, 300 million is a number which the media can latch onto. It smacks of pride and a cockily arrogant sense that America's power in numbers has in no way diminished. Yes, the number is large, and the population does indeed continue to swell, pregnant with possibility and fraught with the potential for disaster. In this land of plenty, we still see countless go hungry, our charitable institutions already stretched beyond capacity.

When we reach 325 million, what will the soup kitchens do then? How long will the ER wait be at that juncture? How many more stores will Wal-Mart have built in order to sell us even more items made in sweat-shops in Indonesia, China, and Mexico by workers unprotected by rights which we hold dear here in our own homeland, their environments degraded by lax regulations so that American companies can generate enormous profits at home? How many more billions will McDonald's have sold, further augmenting the obesity epidemic which strangles our healthcare system and economy with unnecessary costs?

300 million. We can put away the champagne and confetti now that the media has had its day. Now we must roll up our sleeves and decide whether we will allow this number to simply sink our society under the weight of its own metastatic expansion. We have a responsility to these new members of our human family here on this continent, and we'd better think fast.

Tuesday, October 17, 2006

A Cup of Grand Rounds

Please see Emergiblog for this week's Grand Rounds (with a creative Starbuck's theme). This is the first Grand Rounds to which yours truly has submitted a post for some time. Enjoy it with a cup o' joe.

Monday, October 16, 2006

Bureaucracy Now!---- A Rant

Healthcare is riddled---no, saddled---no, ruled and regulated----by bureaucracy. From visiting nurse agencies to hospitals to private practices, bureaucracy with both a capital "B" and lower-case "b" own the airwaves and pocketbooks of the healthcare system. Whether it be fiduciary or surgical, top-down bureaucracy rears its ugly head like a rabid marsupial. You know, all marsupials have deep pockets for the protection and nurturance of the young, and the only "young" spawned of the healthcare system is money, or its popular euphemisms, market-share and capital. And don't be fooled by a hospital that's a not-for-profit. Those wolves in sheep's clothing can devour weaker competitors for lunch and regurgitate a new "satellite" branch for dinner. But I digress.

Today, I was informed by a visiting nurse---in whom I place my complete trust and confidence, by the way---that a mutual patient of ours is in need of a wheeled walker. This patient, of undisclosed race, gender or age, has long-standing AIDS with various complications including dementia and mental status changes, a newly-discovered bone spur in the lumbar spine, worsening depression, newly manifested self-mutilating tendencies, hypertension, hypothyroidism, Hepatitis C which failed treatment with Interferon and Ribavarin (the standard of care for the "cure" of chronic Hep C), and chronic pain of unknown etiology. S/he has had several precipitous declines towards disability or death, and several subsequent and equally noteworthy recoveries, like a magical phoenix rising from the ashes of a recalcitrant body's failure to thrive.

Now, having gone from fully ambulatory to walking with a cane and then progressing to a manual wheelchair, this patient is beginning to regain some of his/her strength, and with assistance and perseverance---and despite massive depression, suicidal ideation, and self-inflicted cigarette burns on both hands---this courageous individual is in need of a walker to facilitate movement from the wheelchair to a standing position, the cane not being enough to support such a transfer.

I happily obtained the necessary paperwork from the medical supply company---paperwork which is, I must say, meticulously designed to comply with the bureaucratic hungers of both Medicare and Medicaid. Discussing this newly arisen need for equipment with the primary doctor, I rapidly obtained his signature, completed the paperwork with the necessary "Medicare-ese" needed in such delicate situations, and faxed said paperwork to the supply company forthwith, content to move on to other pressing matters, satisfied that my patient would then, through the miracles of modern communication technology and computerized billing, receive a home delivery of said device within 48 hours, as is the customary turnaround time with this particular company with whom we have a chummy (and somewhat bureaucratic) working relationship.

Ten minutes later, I received a call from the above-mentioned company to inform me that the doctor had not dated the form where he had signed it, so could I please add the date to the form and re-send it? (Couldn't the person on the other end fill in the date? Oh no, the uppity ones at Medicare would examine the signature and date with a magnifying glass, and a handwriting specialist would determine if they were both written by the same person!) Feeling more and more like this was a scene from Terry Gilliam's Brazil, I filled in the date---using the same color ink as the doctor, of course---and re-faxed the form, putting the original in an envelope to be mailed, since Medicare (read: "the bureaucrats") wants an original on file.

Again satisfied that I had done my nursely duty, I moved on to other (now even more pressing) tasks, and was interrupted by yet another telephone call from the medical supply company approximately an hour later. Was I aware that the patient already had a manual wheelchair? Yes, indeed. Was I also aware that the patient has Medicare as his/her primary insurance with Medicaid as secondary? Of course. Was I also aware that Medicare will not pay for a walker for a patient who already has a wheelchair?

I stared into space, noting all of the varied colors and relative positions of the push-pins on my bulletin board. Dissociation can be helpful in times of stress (as can Prozac).

"Do you mean to say that, even if my patient needs a walker to get up out of his wheelchair, he doesn't qualify?" I asked incredulously. The answer was affirmative. "Do you also mean," I continued, "that a patient who improves and becomes more ambulatory should therefore remain confined to a wheelchair because Medicare feels the paltry cost of a walker is just too much to provide for this person's improved quality of life and mobility?" I was informed that yes, in Medicare's eyes, he should stay in the wheelchair. I hung up the phone and put my face in my hands.

Big sigh.

So, yet another bureaucratic fight for this nurse to wage? So many other battles are pending, like the patient who lives in an apartment with severely sloping floors which the housing authority claims is fine, even for a patient with severe arthritis. Oh! the humanity (or lack thereof).

What bureaucratic nightmare will I encounter tomorrow? You can rest assured that one will most likely make its presence known sooner than later. And what is a lowly nurse, a mere cog in the healthcare wheel, to do? Yell? Scream? Rage against the machine? Abuse beer and benzodiazepines? Take your pick. Til then, let's hope no faceless bureaucrat in a cheap suit is sitting in some cubicle at Medicare scheming up even more insidious ways to save money and diminish the quality of life of its recipients. Then again, that's probably an apt job description for someone with no healthcare experience who is at this moment burning the midnight oil and doing just that. He probably has a boss who told him to stay until he could figure out how to screw one more Medicare recipient out of $50 this week. (And that boss probably gets a $100 raise for every $50 saved. Go figure.) So, let's just hope he has one too many tonight after work as he drowns his guilt with cheap gin at a local bar and calls in sick tomorrow. Maybe then I'll be able to get something done after all.

Saturday, October 14, 2006

The Phlegm and the Fury

As a nurse, I absolutely dread the advent of flu season. Obviously, I personally dread getting the flu myself. It's debilitating, demoralizing, and seems to take forever to recuperate from. It necessitates lost days at work, eats up my earned time for future vacations, and can set me back physically for weeks.

Aside from my own selfish reflections vis-a-vis the flu, I loathe the inevitable confusion and rancor over flu vaccine stocks. First, we usually hear that last year's problems with inventory and distribution have been solved and that "this year will be different". Not long after that pronouncement, we generally learn that the clinic has not received the number of doses ordered from DPH, and that our affiliate hospital system is having problems obtaining its full allotment. Aside from that, tainted vaccine and factories failing inspection always seem to make the evening news.

As the patients' panic calls begin to pour in, I do my best to quell fears, subdue the masses, and fight to get my hot little hands on enough vaccine to inoculate the thirty or forty most vulnerable of my caseload. Failing my ability to adequately meet my patients' needs, I punt, sending them to any and every flu clinic that I can locate in the city.

For people with AIDS, cancer, hepatitis and COPD, a year without a flu shot seems unthinkable, although I try to also educate them that a vaccine will not protect them completely. It's also hard for them to understand that a bunch of scientists basically takes what amounts to an educated guess as to which strain will snake its way across the US this year. They've been wrong before, and sometimes you just have to get sick.

Aside from the struggles over the vaccine and its relative lack or abundance, the sick calls then begin. Patients with the flu---even though it's definitively a virus---inevitably want antibiotics. While some protracted viral illnesses will indeed manifest secondary bacterial infections in some part of the respiratory system, we try to assist our patients to "tough it out", weather the storm, soothe the symptoms with NSAIDS and fluids and rest, and call us in the morning. This tactic is the most difficult to finesse, especially when our patients are used to using medicines to eradicate symptoms. Sometimes, I tell them, you just have to slog through the phlegm and the fury to get to the other side. They're generally not amused.

So, as October winds up into the middle of the month, Flu Vaccine Fever will soon spread like TB on a hermetically sealed city bus. The symptoms: frequent calls as to when the shipment of vaccine will arrive; requests for prophylactic antibiotics; requests for prophylactic Percocet (why not?); and panicked calls with fears that the dreaded illness has finally struck pay-dirt in the patient's home. My mantra: fluids, Tylenol (Ibuprofen if any liver disease is present), more fluids, sleep, more fluids, more sleep, and still more fluids. And don't forget to sleep. And, oh, did I mention the fluids?

The Flu Vaccine Fever will soon be upon us. May compassion fill my heart, may patience be my guide, and may vaccine supplies flow like champagne at a wedding.

Friday, October 13, 2006

Still Eating our Young?

The recent experiences of two friends who are newly-minted nursing school graduates underscores the notion that the needs of new nurses are not being met when they hit the ground running. In the hospital setting, especially, new nurses need gentle and constant nurturing and preceptorship in the first stages of their career. Taking into consideration that nurses in the hospital are dealing with acutely ill patients, often pre- or post-op, with a plethora of comorbidities and high risk of complications, new nurses cannot be expected to jump on that wagon alone for some time. It is disconcerting that some new grads seem to be getting the short end of the preceptor stick, as it were.

Having completely eschewed the whole hospital experience post-graduation (something I was told was professional suicide), I have not personally been responsible for six or more patients at a time on a Med-Surg floor, but in my current capacity as a Nurse Care Manager, caring for more than 80 chronically ill patients on an out-patient basis does give me some traction vis-a-vis the vicissitudes of detail management and multitasking.

I'm saddened that new nurses are invited into the intense environment of the hospital, given cursory orientations, left in the charge of preceptors who are themselves too stressed and overworked to do their junior colleagues justice, and then thrown to the wolves, often drowning amidst the acuity of their multiple patients and the resultingly overwhelming paperwork.

How many new nurses have been frightened away from their newly chosen career based on a devastating first work experience? How many new nurses have been proferred less-than-adequate guidance as they entered the fray?

Taking into consideration the overall nursing shortage, the simultaneous nursing faculty shortage, and the fact that nursing schools are turning away record numbers of qualified applicants due to that lack of faculty, it is even more imperative that new nurses be given the highest quality introduction to their new career as possible. If we lose them to other industries due to our lack of leadership and empowering mentorship, then it is not only us, but also the hospitalized and ill public, who will suffer in the end. Nursing shortages can translate into overworked staff, increased errors, increased nosocomial (hospital-born) infections, decreased satisfaction for both staff and patients, and overall poorer outcomes in both surgical and non-surgical patients.

It has been said for decades that nurses eat their young. You would think that after so much time, after so much experience garnered by so many, that this industry-wide practice by jaded and overworked nurses would come to an end. Apparently, it is still a nurse-eat-nurse world out there, and many a new grad is suffering because of such a widely tolerated atmosphere of poor management and lack of empathy for the new nurses in our midst.

If nurses wish to truly be the purveyors of health that they claim to be, then the nurturing must start with the self, extend to coworkers (and neophytes especially), colleagues, and then to the public at large in the form of our patients. If we do not care for ourselves and each other, we are truly only continuing outmoded practices propagated by the patriarchal paradigm. (Alliteration unintended but nonetheless entertaining.)

In a female-dominated industry, traditionally male managerial models of subjugation, humiliation, and trial by fire must be altered, or the unhealthy and overwhelming hell of being a new nurse may only be prolonged for decades to come. For all those who do indeed nurture the neophytes, thank you---your service will benefit more than you may ever know or experience. For those of you who are guilty of letting the struggling swimmers drown, it's time to embrace a new way of being and welcome those who join our ranks with open arms and willing hearts.

Thursday, October 12, 2006

Nervous System Reconstitution

Those of us who work with people with HIV and other immune disorders understand the concept of "immune reconstitution", when the patient's treatment of the virus eventually begins to restore the immune system. There are positive and negative aspects of this process, but the overall returning of immune function is a good thing in the end.

Just as immune systems must reconstitute, so do nervous systems, especially the nervous systems of stressed nurses whose lives seem to have gotten the better of them. Sometimes Nervous System Reconstitution entails taking time off to relax, be at home, and practice good basic self-care. Sometimes it means increasing exercise, sweating out the toxins and stress, working tired muscles into shape. At other times, food and drink is the answer, vital elements from nature literally feeding the cells, nourishing the tissues. Drinking water is important for cleansing cortisol, a stress hormone, from the body, and exercise also helps in this regard.

The prudent nurse or healthcare professional will decide to do what it takes to nurture the nurturer, prevent stress-based illness, and bring balance to the mind, body and soul. Many other modalities of Nervous System Reconstitution are there for the taking: friendship; creative pursuits; enjoyment of the arts; sports; taking care of one's responsibilities at home; pets; cleaning and organizing to decrease the stress of disorganization; time with children (or not!); meditation and other spiritual practices; yoga; massage; cooking; the pursuit of hobbies; gardening; the list is endless.

How can we as healthcare professionals, burnt out and crisp around the edges, hope to foster and encourage healthy living in our patients when we are walking on the edge of personal oblivion? How can we be so disingenuous as to expect our patients to follow our advice when our poor example is written in the lines of stress on our faces, in our hollow and fatigued eyes sunken with lost sleep and overwork, our short tempers, our obvious burn-out?

I have had a patient with a diagnosed thought disorder look at me and say, "You look really tired." I've had other patients look concerned and ask, "Did you eat lunch today?" Whether the patient is mentally ill or physically ill, our stress is perceived, and although we think that the world at work will fall apart without us, we eventually learn that the clock at work travels from 9 to 5 (or 3 to 11, or 11 to 7) whether we're there or not, and our well-meaning colleagues are entirely capable of covering for us when we're gone. We can make ourselves indispensable in the big picture, but that little picture yearns for a time out, and if we don't give it its due, it will come back to haunt us with a vengeance, bringing illness and unhappiness along for the ride.

Healthcare providers are notorious for being bad patients, often eschewing timely self-care because "there's not enough time". How many nurses are overdue for mammograms, dental cleanings, PAP smears, prostate exams? How many doctors ignore symptoms for which they would advise patients to seek attention? How often do we go to work sick, coughing on our patients because the office would never survive without us? When will we learn? When will we get it?

I'm guilty. I'm as bad as the rest. Luckily I have a spouse who can spot my stress in a heartbeat, who can see the signs, read the tea leaves, and threaten divorce if I don't call in sick. She will cajole and coerce, determined to convince me that caring for myself is also an act of caring for others, allowing myself to reconstitute and return, refreshed and available to begin again, providing better quality care because I have cared for my own needs. How many colds has she helped me to avoid? How many moments of spiritual torture have I side-stepped by simply taking a few days to myself? To calculate the value of self-care would need a calculator not yet invented, with circuitry which recognizes inner peace, balance, and a body and mind at ease.

For now my inner calculator will need to suffice, that barometer in my mind which tells me when I am walking a fine line between health and illness. Keeping that barometer in check should be a prime focus, a measure of contentment and balance. If I lose sight of that marker, if I let myself go to that edge too often, the consequences are just not worth the paltry rewards. No one loves a martyr, and I'll stake my future on the fact that my health will take me anywhere I want to go, but its demise will take me to only one place---an early grave---and I'm in no hurry to arrive at that final destination.

Here's to health.

Tuesday, October 10, 2006

Illness, Change, and the Spectre of Loss

My step-father begins radiation this morning at 8:30, perhaps at this very moment. He will also take oral chemotherapy for the first six weeks and then perhaps change to intravenous therapy thereafter. The only cure for pancreatic cancer is surgery, and this is not a possibility for him, at least for now, and perhaps never. These are the times when living five hours away from one's aging parents is a painful and isolating experience.

Life-altering illness offers many lessons and will push one to the edge and beyond. Change is the only constant here, and there are so many with which one must cope. It is not only change which holds one in its grip, but the spectre of loss visits in guises both small and large. One might lose one's hair from chemotherapy. The ability to drive, to eat whatever and whenever one wants, the ability to control one's bodily functions may all be lost at any time in this complicated game. For every step forward, there can often be several steps back, a new aspect of loss appearing at any moment.

I would assume that the most devastating losses come in the form of the loss of independence and of dignity. Retaining independence becomes a major challenge as the body gives way, as symptoms preclude even the most basic of daily activities. And with the loss of independence, one may begin to feel a loss of dignity, of the self, of one's place in the world. When the individual becomes weak, incontinent, unable to toilet him- or herself, unable to bathe independently, these are the losses in which the person begins to lose quality of life and a true sense of self, or at least a sense of the self as one has known it.

Anticipatory loss is another aspect of illness. As a form of grieving, this manifests as one faces losses which are only around the corner. Depending on the form of disease, one can anticipate further deprivation and change. In progressive neurological disease, even the most simple function may be on the docket. The powers of speech, swallowing, hearing, touch, sexual function---these too can be taken away and remain but a memory.

The most devastating of all losses may be the knowledge that one will eventually leave one's loved ones behind. The worries and concerns may mount: Will s/he be OK? Will they be financially solvent? Did I do enough to prepare? Are my affairs in order? How much will my illness cost them, both emotionally and economically? Will my loved one be able to continue on without me? Who will care for them when they are sick or needy? Did I accomplish all that I wanted to accomplish?

Finally, beyond loss, one begins to look toward the future, one's future beyond this world. One examines the spiritual questions on the table, reflects on one's life, hopefully makes peace with the choices that have been made, and considers what will happen when the curtain closes on this earthly existence. The beliefs that have grown in the psyche and mind over the decades now come to bear. One's faith---or lack thereof---makes itself known. They say there are no atheists in foxholes, and the existential begins to take on more and more importance as the material world recedes. This is the time when the outer losses lose the crucial impact which they once carried, and the mind turns inwards towards matters of spirit, of faith, of making peace with both life and death.

I have watched a number of individuals enter, travel through, and complete this process. For those who lost function of outward communication and became demented or aphasic, their inner peacemaking was just that---inward---and I have not been privy to their process. For those who retained their mental capacities and ability to communicate until the end, the observer and loved one can glean much more from the experience and in some ways share more in that journey.

When the individual entering this phase of life and letting go is an intimate loved one (like a parent) rather than a patient, that is where the poignancy of this process takes wing, and also where the pain can become more visceral. This is the place where my mind and heart now dwell, and it's now my turn to walk this road as I have watched so many others travel with me as advocate and guide. The loss may be swift, it may be slow, but it is real, it is intimate, and its reality cannot be denied. I feel for my mother as she faces this gradual deneoument of her life as she has known it, and while I fear for her security and stability, I also must care for my own. This is no place for codependence and loss of one's center. This is a time for groundedness, thoughtfulness, spiritual insight, sensitivity, and compassion for myself as well as others.

As a family, we have crossed that threshold of loss and letting go, and the path which we will follow together has been trod for millenia. May we do it well, with grace and humility, and come through the other side stronger and more healed, and may my step-dad's losses and eventual passing be peaceful and as painless as possible, with suffering kept to a minimum. This is my wish for us and for all families who are on any portion of this universal journey of life, love, and death.

So be it.

Saturday, October 07, 2006

More on Compassion and Suffering

When speaking of compassion, one must also speak of suffering. The two seem to go hand in hand, the former a frequent consequence of the latter.

Many forms of suffering pervade the human condition: war, hunger, illness, crime, loneliness, imprisonment, enslavement, poverty, natural disaster. Where do we turn to ameliorate the suffering of others? Whose suffering do we choose to do something about and to whose condition do we turn a blind eye?

The entreating envelopes arrive in the mail almost daily: Amnesty International, The Human Rights Campaign, Oxfam, the list is endless. There is global suffering, local suffering, the plight of animals, of children, of women, of the sick, of the environment. Which envelopes do you throw in the trash? Which ones live on your desk for weeks or months? Which ones are returned immediately with a check? How does one decide where one's money is most needed? How does one not feel guilty about all of the worthy causes you just cannot afford to support?

For all the direct action in which an individual can take part, it seems that the soul, the very heart is the place for one to begin practicing compassion. One must first cultivate compassion for the self, learn to forgive ones self over and over again, assuage one's own suffering, and perhaps then extend that energy to others. I am often much quicker to excuse the behavior or actions of others while digging deep holes of self-blame and recrimination in my own heart and mind. Thus for me, the question is not necessarily how to cultivate compassion for others per se, but more how to simultaneously allow myself that same level of acceptance and peace. Perhaps from that place, one's actions towards the rest of the world come from a deeper, more grounded center built on self-love rather than guilt, on fullness rather than lack. Perhaps.

So, those envelopes that keep coming in the mail? I can guiltily drop them in the recycling box and hate myself for my shallow self-centeredness, I can send them each a pittance in an attempt to assuage my guilt, or I can simply send my money to the place to which I am guided by my heart, and continue to live a life driven by compassion, certain that what I produce and engender in this world will echo ever wider in ripples of compassion and love.

I think I'll choose to forgive myself and others, do what I can, release the guilt, release the pain, and wake up tomorrow and start again.

Tuesday, October 03, 2006

Detail Management

Detail management is the name of the game when faced with the daunting task of keeping track of so many individual lives. I often wonder if I'm doing enough, and whether my processes for managing such information is useful and efficient. They didn't really teach us such things in nursing school, so creative seat-of-the-pants creativity is often the modus operandi.

On a daily basis, I use a printed spreadsheet to track my contacts with each of my 80-some-odd patients, whether it be an office visit, home visit, or telephone call. This list, which I carry in my bag, gives me a snapshot of who's in touch, who's on the ouskirts of my orbit, and who is apparently MIA. I also have another spreadsheet which tracks whether I have had contact with each patient on a monthly basis. When I see several blank spaces in a row for a particular patient, I know that a few months have passed my by without my having lay eyes on that person, or at least checked in by telephone. I am not expected to see every patient every month, but I'm expected to make attempts at contact, and document each attempt accordingly for the patient's chart. As all nurses have drummed into their heads during nursing school, "if you don't write it down, it never happened". So, I record every disconnected telephone number reached, unanswered call made, or other attempt at finding the ones who got away.

Looking at these crude devices which I have devised for my own obsessive-compulsive purposes, I can see in a glance who the freqent flyers are, who is avoiding me, who might be dead, or who perhaps is just under the radar. Unfortunately, there are a few who have a string of blank spaces on my log, demonstrating the fact that if they truly are out there, they just cannot be found without hiring a detective. Perhaps they like it that way. Perhaps they don't care.

Just recently, I learned that one patient who I have never met is now in jail. Over many months of trying to find her, I ran into dead end after dead end. (Did I say this would take a private eye?) When I would check the hospital computer system periodically, I would learn that she had been in the ER, and I would consequently scour the electronic medical record for an updated address or telephone number with which I might contact her. These leads would generally fail, but one eventually led me to this patient's grandmother, who informed me that her poor misguided grandchild finally ended up in jail. "At least we know where ______is. S/he's fed, clothed, and taken care of medically", she said. I empathized with her and promised to contact the jail (where our doctors run the show) and follow up on her family member's condition. At least I found him/her and my colleagues over at the "Big House" can check in.

Trying to follow eighty people relatively closely and keep them straight in my mind is a challenge. Of course, there are a number of patients with whom I have worked for more than five years, and these are especially well-known to me from the salad days of our organization when we had the luxury of miniscule caseloads of thirty. What luxury that was! We had the time to really build relationships then, holding our patients' hands through every twist and turn of the healthcare rollercoaster. Now, in our current iteration, I still do my best to provide personalized care, but there is just not enough time to do it justice. As much as I liked my old way of practicing, it just is not sustainable. The up side of such a change is that more responsibility is put on the patients' shoulders where it really should be, although many simply fall under the weight of their own myriad needs. How to find that balance of empowerment and assistance? A good question to which I have no answer.

So, this very tired and overworked nurse tries his best against long odds, and I watch my colleagues do the same. We go to extraordinary lengths---often disappointed, manipulated, and otherwise thwarted, but some rewarding moments sneak through almost daily. The chaos is sometimes overwhelming, as is the chaos of having 19 clinicians in a relatively small space all talking on phones, sending faxes, emailing, dashing for medical records, and catapulting in and out the door to and from home and office visits to our hundreds of patients. It is a perplexing exercise, often quite frustrating, and I often long for simplicity and quiet, something which is rarely seen and would probably feel somewhat pedestrian and boring compared to the general maelstrom with which I'm acquainted.

It's 8:30pm, I just finished my notes after having dinner with Mary, and now I write about my work to exorcise it from my mind so that I can move on with a relatively clear head to the rest of my evening. This is a frequent practice, the office frequently being a place where paperwork just cannot be finished in peace. I look forward to moving on to laundry, bills, perhaps some reading, some emails, and then the big reward---seven or eight hours of sleep---which will allow me to get up and do it all again. With "retirement"(is that even possible these days?) perhaps several decades away, most likely, I know that a change of pace will be needed soon. Such ongoing stress takes its toll, and there will come a day when it will be time to leave this harried rat-race behind. Til then, this rat will get back up on that wheel tomorrow, nose to the healthcare grindstone.