Monday, February 27, 2006

Fait Accompli

"A blog is a unending book in which the author keeps writing the first page for readers constantly waiting for the last."

---- Nick Piombino , Fait Accompli

Sunday, February 26, 2006

Working the System

A gentleman on my case-load with relapsing and invasive cancer was transferred from the hospital where I have rounding priviledges to an acute care facility where I do not. While he was inpatient, I was able to have direct contact with the social worker, floor nurses, oncologists, and dietician, my input readily received and documented in the chart each time I visited.

When one of my patients leaves our hospital system and is sent outside the network, my ability to advocate and act on their behalf is made astronomically more challenging. Based upon the receptivity of the facility, my job as liaison and advocate can take on a very different tenor. That said, even in the hospital where I have priviledges and can write in the chart and be part of the decision-making process, there are still providers who question my role, having never heard of a "nurse care manager" and wondering what business it is of mine--lowly nurse that I am---sticking my clinical nose in their care. Overall, though, any help from the outside is generally welcome, and I serve as a critical link to family, the primary provider, the visiting nurses, the other specialists involved in the patient's outpatient care, and I hold crucial information that may otherwise fall through the cracks. Not many people---especially not those on Medicaid---have a dedicated nurse who will follow them through every admission and discharge, running interference and clearing the way for quality care (as well as visiting them at home and occasionally accompanying them to specialist visits). The fact is, I don't even think people on premium plans have such a service. It is so far outside the norm that many people just don't think it's possible. But here I am.

Arriving at the new facility where my patient had been ensconced less than an hour, I realized that I had arrived at the 3pm change of shift, a mixed blessing. While everyone was around at this time, it is also a point in the day when the "hand-off" occurs, and the team who has the patients for the next eight hours wants a full and comprehensive report. An unannounced guest from an outside agency demanding time that no one has is not always welcome. But this was my lucky day.

The floor nurse for the shift was not hard to find, and we quickly realized that she had graduated from the same LPN program that I now teach for, but prior to my short teaching career. Within a few minutes of my talking about the patient, she realized that I was a gold mine of detailed information, not only about the recent hospitalization, but about the entire course of my patient's disease as well as his social history. She acknowledged how a new patient arriving with a stack of papers from another facility and very complicated needs often poses a challenge for the receiving facility. Was anything missed? Is this med list complete? Are their special needs not mentioned? I can't even count how many times hospital discharge orders are inaccurate or incomplete. It's basically my job to pick up the pieces.

After meeting with the ever-so-receptive nurse, the next stop was the Nurse Practitioner who works the floor. She was much less amenable to a conversation but I scribbled her name in my book and gave her my card, being sure to make eye contact and shake her hand.

Entering the patient's room, luck would have it that the rounding doctor had just drawn the curtain to begin his examination of the patient whose tracheostomy currently precludes his ability to speak. My intervention at this point provided some crucial information regarding my patient's desires in terms of advance directives, need for frequent suctioning, an ulcer on his sacrum, recent problems with his g-tube, his home situation. The doctor was exceedingly receptive and we agreed to be in touch weekly.

Feeling like I had already hit the clinical jackpot, in walked the physical therapist, a woman whom I had actually ridden up on the elevator with when I first arrived---we had exchanged friendly smiles during that brief ascension from the first floor to the third. She was also very receptive to my input and agreed to stay in contact.

My patient grinned at me from ear to ear, mouthing the words "thank you". He knows my lip-reading skills are awful, but "thank you" is pretty easy to decipher. He hates to have to use pen and paper but also knows that I'm useless to him otherwise when it comes to getting his point across. My lip-reading neurons must have been destroyed by adolescent marijuana use.

The next day, I returned and my good luck continued, the very friendly and responsive respiratory therapist in the room when I arrived. We had a long chat about our mutual patient until the very same physical therapist arrived, and I left my patient in her capable hands.

Yes, I will concur that the healthcare system in this country is generally broken, or at least crippled. Quality and continuity of care is often lost in the fiscal shuffle and the protection of the bottom line, as well as due to the ever increasing rates of malpractice insurance driven higher by our litigious society. I also concur that even my work is hindered by constraints and roadblocks that cause no end of consternation and cursing. However, when I can use my skills and professional collateral to finesse an improved outcome---whether momentary or long term---this is a coup, a small victory, and a moment for satisfied reflection.

Saturday, February 25, 2006

A Visit with Rodin

A Saturday morning visit to an exhibit of a collection of works by sculptor Auguste Rodin was a feast for the senses and a thing of beauty to behold. While The Thinker and The Kiss may be his most famous and iconic images, it was his realization of a monumental project entitled The Gates of Hell which truly caught my attention. While the exhibit did not contain the actual Gates of Hell which are 20 feet tall and weigh eight tons, a small plaster maquette, related works, and an award-winning documentary film about the making of The Gates were all equally riveting. Luckily, while living in Philadelphia as a young art student in the early 1980's, the Rodin Museum in that city did indeed have a bronze cast of The Gates from which I studied and sketched at length in those years.

The Gates of Hell is Rodin's vision of the entrance to Hell, inspired mostly by Dante's Divine Comedy, but also apparently by his own personal vision of the corporeal sufferings of humankind. The Thinker is set near the top of the Gates, ostensibly representing "The Creator" contemplating "his" creation and the manifestations of human pain. According to my reading and the film shown at the museum today, Rodin did not see Hell as a place of fire and brimstone, rather as a virtual space where humans engaged in the torments and vicissitudes of corporeal existence, suffering their longings and afflictions in a swirling field of desire, loss, and pain. If you ever have ability to see The Gates, it is a pause worth taking, as is the bulk of his work, all of which is breathtaking in its perfection. The intensity of pieces like The Gates is mitigated by the tender loveliness and delicate bliss of pieces like Cathedral. An interesting note: Rodin was often accused of making casts from live human bodies since his sculptures were so lifelike and perfect in their representation of the human form. A strange compliment which actually damaged his career in the early years but did little to keep him from being eventually hailed as the greatest sculptor since Michelangelo.

Friday, February 24, 2006

Just Sit There

Just sit there right now
Don’t do a thing
Just rest

For your separation from God
Is the hardest work in this world

Let me bring you trays of food
And something
That you like to drink

You can use my soft words
As a cushion
For your head

---Hafiz, 14th century mystic Persian poet

Wednesday, February 22, 2006

Things Don't Go Better with Coke

A number of my patients have previous histories of cocaine addiction, and there are several active users on my caseload at this writing. Relapses and remissions of addiction are par for the course in this line of nursing which borders on social work, and I must often wrestle with the question of how best to approach my addicted patients, especially those who are also being treated for chronic pain with narcotics.

While many in healthcare may extoll the virtues of pain as "the fifth vital sign", it is popularly understood that pain is woefully under-treated here in the United States. Combine chronic pain conditions with an actively addicted patient---or even addiction in remission---and you have a recipe for less than stellar healthcare and even worse outcomes. Only very special providers are even willing to walk that fine line, and I'm proud to work with a group of docs and NPs willing to do so.

Observing my patients struggle with addiction issues is heart-wrenching and maddening. Even a well-meaning medical provider who agrees with the "disease model" of addiction---taking into consideration that it is an illness no different, really, than depression or heart disease---one can always fall into thinking that the individual is "weak" or "lacks will power". Within our practice, although we share gallows humor about our patients as a way to relieve stress and share our frustrations, at the end of the day we know that trauma, post-traumatic stress, mental illness, genetics, and complex psychosocial issues impact an individual's predilection for substance abuse. Yes, some people may have an easier time than others overcoming addiction, but it is generally accepted now that, like obesity, there are some factors out of our patients' control.

I sat across from a fifty-year-old woman today, discussing her continued sporadic use of cocaine. We're treating her for fibromyalgia-related pain with several forms of narcotics, and we do oral drug screens on a weekly basis when she comes to pick up her prescriptions. We're also screening to make sure that the prescribed narcotics are actually in her system and not being diverted to others. With her history of chronic pain, abandonment, psychic and physical trauma and past abuse, it's really no wonder that she leans on illicit substances for succor. When I broached the subject of my possibly discussing her cocaine addiction with her therapist, she refused to sign a consent for me to do so, cutting off an important and possibly effective aspect of her potential recovery and remission. Thus, when I speak with her therapist, my hands are legally tied and I cannot mention anything about substance abuse or divulge the numerous positive drug screens in her chart. Unfortunately, this handicaps our treatment of her condition, and forces us to refer her to an addictions specialist who will also be blocked from communicating with her therapist.

A patient of whom I wrote previously was recently on a cocaine and heroin-fueled binge after making great strides in his care. Eviction and homelessness notwithstanding, he was taken in by family and showed some signs of improvement. Sadly, when his check came on the first of the month, he disappeared from view, did not return to his sister's house where he had been staying, avoided the visiting nurses, and eschewed all medications and insulin for almost a week. Thankfully, he had the presence of mind to show up unannounced at the wound clinic and have his dressing changed, knowing full well that failing to follow up in a timely matter would eventually end in gangrene and amputation. Thanks for small miracles. Whether he shows up next week remains to be seen and I have not been able to reach his family to ascertain if he has again resurfaced. It's a waiting game, especially since I don't have the time to drive the city streets trying to find him.

Working with this poor, chronically ill and generally disenfranchised community, addiction and its unhappy effects are normal aspects of my work, and part and parcel of many patients' lives. Compassion and love are still called for, and judgementalness and criticism only fuel the flames of separation. While my compassion-meter is sometimes pushed beyond its perceived limits, I find there is always more compassion and love somewhere in the chambers of my heart. The ultimate goal is healing, and especially in the face of addiction, compassion and understanding must, in the end, be the energy which fuels the healers' fire.

Yet Another Grand Rounds

Grand Rounds is now up at Dr. Andy's blog. Please pay a visit and read some of the best health- and medicine-related blogging on the Internet.

Tuesday, February 21, 2006

Grindstone

After arriving at work this morning and making a cup of coffee (decaf hazelnut with cream and honey), I sat at my desk, stultified and frozen in front of the computer. My thought process revolved around the notion that I didn't want to be there, and I felt a profound gravitational force of planetary proportions drawing me back to home, the warm bed, the computer, daytime television, anything to escape from the need to work with nose to grindstone. I left a voicemail for Mary and told her I felt like a kindergartner who just wants to be home with Mommy, curled up with a book in front of the TV. I even flashed back to my first day of pre-kindergarten---one of my earliest memories---when my brother and father dropped me off at school on a late August morning so that I and my five-year-old peers could get a small taste of what school would feel like. As I watched them walk away, I yearned to be outside with them, walking down the path through the woods back to our house and the openness of the day, not the closed-in quality of the classroom that smelled like glue and urine. Luckily, my office does not smell like glue and urine, but the din of phones, beepers and idle chatter did little to relieve my early morning sorrow.

I quickly read my personal emails, one missive from a friend who wanted to know when I was going to take a vacation. I emailed her back and explained that, having used up my vacation time for the survival strategy of long weekends throughout the winter, I now have about 10 hours accrued, and will need to knuckle down and not take any time off to speak of until summer, as long as I hold onto the vision of two weeks off in August, my favorite time of year when I revel in the enjoyment of my birthday and summer's cauldron (apologies to Andy Partidge). I mused in my email that this is the conundrum of the post-modern worker: work with nose to proverbial stone for months on end, saving up every scrap of time for that longed-for summer vacation, a paltry two weeks which then once again berefts one of any further time off. Add to this the sly idea of "Earned Time", in which one's sick time, personal time, vacation, and holidays are all lumped into one "bank" of time off, and the worker is faced with precious little vacation time if, perhaps, the flu cost him or her a week of work in the dead of winter, or some personal days for medical appointments chewed up even more of those precious days away from the desk, or the death of a family member necessitated some unexpected additional days off from work.

My European friends enjoy at least six weeks of vacation each year, and barely a season goes by when they aren't going off to Spain for holiday, dashing to France for a weekend, or spending a week on their favorite Dutch island. Europeans understand the value of family and time away from the workaday world, and no matter how much Americans blather about "family values", families are not highly valued if they don't have substantial leisure time to spend together. If one were to create a lifestyle in the States with ample vacation time, one would need to be either well-off, a misanthrope who eschews normal society, a vagabond, or a person who is willing to eschew the trappings of middle-class life and have few possessions in the interest of living lightly on the earth. If one chooses the middle path---work, home, kids, modest possessions---one pays the price. Of course, the person who avoids those trappings pays a price as well, and we all must live with the consequences of our choices. Sure, I could have created a life of barefoot fancy in the Florida Keys doing massage on the beach, but I've chosen this lifestyle for a reason. (What reason was that, again?) For better or worse, no matter what my choices, the right to complain is universal and sacrosanct.

So, here we are on a Tuesday evening after a three-day weekend (when, I remind you, Monday's eight hours of holiday were deducted from my "earned time" bank of hours), and I spent the day lost in the details of my work and the soap operas of my patients' lives. Naturally, my own needs and yearnings were subsumed by the needs of others, but as the day drew to a close and I drove towards home, I realized that this grind---which puts food on the table and pays the bills---sometimes feels like it is grinding down my spirit. With Mary out for the evening, I embrace the quiet of the house, the sleepy dogs, the whoosh of the heat through the vents, and the notion that the next twelve hours---even if spent mostly preparing next week's lecture for school and then asleep in bed---are mine, and the grindstone is, for the moment, at a virtual standstill.

Monday, February 20, 2006

Numbers, Relationship, & Writing

Perusing my StatCounter report from the past week, it came to my attention that my blog has now received more than 10,000 hits in its thirteen-month lifetime. What this arbitrary number really means is debatable. It may mean that a great many people have sailed through while surfing the web and perhaps had a glimpse into my life, or perhaps were turned off by the title and subtitle at the top of the page and didn't hesitate to continue on their merry way. I'm certain, of course, that there is a fairly sizeable group who have actually lingered long enough to read an entry or two, some perhaps even offering a comment, and that is in itself gratifying. Better yet, over time I have developed some "cyber-friendships" through the medium of blogging, and these relationships have added qualities of personal connection and some level of either professional affinity or emotional intimacy. And for me, those interpersonal connections are the heart of this experiment of electronic communication.

Over the course of forty-some-odd years of life, writing has always played some part in my world. Like many people, journaling was often the venue: attractive hard- and soft-cover journals, often received as gifts from well-meaning friends, many of which were begun in earnest and then fell by the wayside, the majority of their pages remaining empty after a flurry of soul-searching scribbling. Some of those journals were hard-covered sketchbooks and were illustrated with drawings and cryptic doodling. Still others were records of my travels through Europe, Israel, and Morocco in my 21st year, filled with stories of my misadventures as a peripatetic young adult in search of the Europe he had devoured in the books of Ernest Hemingway, Jean-Paul Sartre, Italo Calvino, Baudelaire, and Victor Hugo, not to mention the dozens of films (too many to mention) glorifying and extolling the virtues and attractions of that distant continent that feels like an ancestral home to me.

Those journals, however, were always disappointing, and could never quite hold my attention for more than a few months at a time. Later in my twenties, I actually attempted to write a novel imbued with the notions and details of my young adult lifestyle as my new wife completed her thesis, seated at a typewriter (yes, a typewriter--it was 1990) on the other siide of the room. That project also sits in a box along with several other projects which also held my temporary interest. The idea of actually going to the trouble of trying to publish my poems or writings indeed crossed my mind several times over the years, as did returning to school for formal training as a writer. Those plans also sit in a dusty box.

Blogging, however, has come to hold a more firm fascination for me, and there are aspects of it that happily keep the ideas fresh and flowing on a regular basis. Obviously, the most attractive part of blogging is ease of use and instantaneousness (is that a word?) of publishing. No sooner does an idea spawn in my head and it begins to take shape on the screen before me. There is no editor or publishing company to dictate content or style, and no censor (that I know of) who will request certain ideas or words be deleted. Artistic and journalistic freedom rule the day, and better yet, readers are free to comment and leave their reactions for all to see. As the host, I of course hold the executive power to delete unwanted comments or disallow comments entirely, but that open door of intercommunication and reaction is what makes the process so interesting for me.

Is blogging the new vanity press? Does it open the door for even more mediocre writing to populate the seemingly limitless expanse of cyberspace? Are the majority of blogs never read by anyone, or perhaps only by a handful of readers? Does it even matter? I would venture a guess that an unequivocal "yes" could be answered to all of these questions, but many of them could be argued as an equally unequivocal "no". If this is the ultimate vanity press---ultimate in the sense that it is a virtually free venue for the publishing of anyone's blogorrhea---then so be it. If newer venues for self-expression and self-publication come into being, so be it as well.

The other day, my son remarked that perhaps blogging and other forms of electronic communication only serve to cut us off from others and keep us all isolated in our homes, glued to computer screens instead of interacting in cafes and other public spaces. I agree to a certain extent, since one can develop such an addiction to computerized interaction that face-to-face becomes increasingly uncomfortable, the anonymity and facelessness of cyber-conversation being more safe and secure. That said, if one has writing and ideas to propagate, one could choose to print them on paper and hand them out to strangers on a street corner, but the reaction to such distribution might be less than enthusiastic. Who knows, though? Perhaps street-corner blogging will be a Luddite response to on-line blogging? Or maybe there can be face-to-face blogging meet-ups where people interested in sharing ideas can mingle and chat and exchange snail-mail addresses and phone numbers? Remember the idea of salons? There are many ways to interact, all of which are valid and worth pursuing. Blogging is simply a way to reach people in disparate geographical areas and across social strata, free of the encumbance of being in the same place at the same time.

So, as for the meaning of the 10,000 hits, it is simply a number, and a number cannot qualitatively measure the human and emotional value of the interactions recorded within it. My experience here is more than a number and is measured by my satisfaction, my interactions with others, and by how blogging has enriched my life. As long as it does not interfere with my interactions with others here in the "real" world, I see no reason for this practice to cease. Addiction or not, it feels healthy for now, and anything that keeps my mind nimble and ideas percolating is good enough for me. 10,000 or 100,000, the numbers are simply a measure of the larger relationship to the world engendered by this most post-modern of activities.

Sunday, February 19, 2006

Shepherding

Friday was spent shepherding my patient from the oncologist to the social worker, and then to see his primary physician. At the oncologist's office, we had to talk realistically about the fact that the cancer, spreading within his non-healing wound where his rectum used to be, is almost impossible to treat. We'll try our best, but the chemotherapy will only buy us some time, and perhaps lead to other sufferings needing treatment themselves. Side effects may become untenable: blood dyscrasias (altered blood counts), infection, nausea and vomiting. With no possible cure, the medicine may be worse than the disease itself. The decision to end treatment---even if it is only palliative and not curative---will need to be an ongoing and subject to change based upon outcome along the way. The choices are painful, and I will be intimately acquainted with this process.

Choosing whether or not to receive cancer treatment which may prolong life briefly---and perhaps prolong suffering as well---is a very personal choice. Whether I would make the same choice is a good question. But at this time, shepherding---midwifery---is my place, and we embark on the journey once again.

Thursday, February 16, 2006

Grand Rounds

Grand Rounds, a weekly "blog carnival" of medical/nursing/allied health blog entries is hosted at intueri.org this week. The editor of this "Valentine's" edition of Grand Rounds has coalesced all of the entries into a fake list of personal ads with puns galore. Can you find the entry which leads to my offering?

Although I have only been featured in Grand Rounds once before, I plan to try to submit more regularly. There are some great medical and nursing bloggers out there, and the breadth and depth of the material covered is astounding and satisfying. I recommend surfing over, and bear in mind that non-medical writers are also welcome to submit.

In a Shoebox

"I feel like I'm trapped inside a shoebox", she said. She called me from "respite"---sort of a low-level psychiatric facility where a person in crisis can check themselves in for a short tune-up and escape from the world. She'd been there before. Seems she was all alone on her birthday and felt such strong suicidal feelings that she called 911. A good choice, and she was roundly praised for her decision to reach out for help.

A sweet woman, with a history of trauma that might have broken the spirit of a weaker psyche, I have done my best to provide the utmost in compassionate and nonjudgmental care. She counts me as a friend, and while I don't directly say "I'm not really your friend, I'm your nurse", I think she understands that our "friendship" is one which is active Monday through Friday from 9 to 5. That's the strange aspect of our work. We build these trusting relationships, we give of ourselves and foster hope and recovery, we blur those therapeutic boundaries to some extent, but that professional boundary must remain intact. Otherwise, this woman may have called me on her birthday---a Saturday---and shared her existential desperation. Instead, she decided to reach out to the place where help was available, and she received the succor and support that she so dearly needed.

The angst that I feel vis-a-vis my patients' suffering is real, though I try to temper it with a realistic view of the limits of my ability to assuage that suffering. A quote by Mother Teresa is attached to my email signature, and it sums it all up for me:

"I have found the paradox that if I love until it hurts, there is no hurt, only more love."

Make no mistake, sometimes that love manifests as anger, akin to the anger a parent feels towards the misbehaving child. The anger doesn't cancel out the underlying love; rather, it is a manifestation of caring, especially true if the anger is directed towards the person's behavior, not their essence as a person.

A case in point, I am angry with a patient of whom I am exceedingly fond. She has fallen into misguided behaviors again: school-age children playing unsupervised in the street rather than going to school; not taking crucial AIDS medications; not paying bills and losing electric and gas service; eschewing the supports and services that I have offered. Of course I care about her, but I especially ache for those beautiful children who are happy to skip school and stay home to play, but are being deprived of the benefit of a solid education which will allow them to rise above the subsistence mode of survival that their mother has achieved in her lifetime. My frustration has reached an apex, and my reaction is to retract and withdraw, allowing the chips to fall rather than swooping in to be the savior who fixes everything. Not an easy choice to make, but I choose not to disempower her by offering to right her wrongs. The local social service agency may remove the children from the home, and so be it. I'll help her pick up the pieces of her health, but first she must suffer some of the consequences of her actions, or lack thereof.

So, some individuals trapped in a shoebox will kick and scream and fight their way out, their desperation and spiritual angst fueling their desire for recovery and healing. Others will do their best to reinforce that box, sealing themselves ever more tightly within its confines. Neither choice illustrates that one is a "better" person than the other (although the current social and political climate in this country seems so quick to judge and condemn others for their errors). Perhaps one is momentarily stronger than the other, but we all end up in a box of some kind some day, and it's the process of how we get there that tells the story of our lives.

Wednesday, February 15, 2006

When Things Fall Apart

Apologies to Pema Chodron for today's title, but it could not be more accurate for what I'm witnessing these last few days. Aside from the patient described in my prior entry, there's the other gentleman with an invasive cancer wherein things only seem to get worse. Then there's the woman who has declined suddenly into an acute dementia-like process that we just can't pin down. Add to that one of my favorite patients who seems to have fallen back into substance abuse, her kids not in school, the school reporting her to the authorities, meds not taken, responsibilities shirked. All of these lives virtually imploding before my eyes.

As I have detailed before, I am a witness to suffering, and I try to keep that suffering from bleeding into my own personal life. It's enough to carry the burden all day, but when it follows one home like a ball and chain, that's problematic. My level of exhaustion tonight is fierce and I struggle to focus enough to write these words.

My true wish is for all beings to be free from suffering. And that includes myself.

Monday, February 13, 2006

How Do We Move on From Here?

The wound smelled like something had died. The odor was overpowering. Sadly, your rectum was removed thirteen months ago and the wound is actually larger than when we started. After more than a year of two visiting nurse visits a day to pack it with various materials in an attempt to heal, prevent infection, and promote tissue growth, this enormous opening where your rectum used to be has simply become part of your world. You adjusted to the colostomy so well and handle its inconveniences with great aplomb. The discomfort of that massive opening and the difficulty sitting in a chair notwithstanding, you still complain so little.

You’ve overcome HIV, keeping your virus essentially asleep with excellent adherence to your antiretroviral medications. The diabetes is also under excellent control, and despite your third grade education, you have internalized the years of teaching and try so hard to be good. You even beat acute TB and underwent nine months of multi-drug treatment, never missing a beat. What fortitude!

The cancer seemed to have been beaten back in 1990 according to your medical records from a hospital in another state. You underwent surgery, chemotherapy, and radiation---you defeated cancer and lived to tell the tale, having received an HIV diagnosis not long before that. You were amazing.

Then, about fourteen months ago, you reluctantly allowed a rectal exam, and there it was, eating away at what was left of that most private and vulnerable area. We hoped that you would heal well, that the cancer was completely removed (a difficult promise to make), that your recovery, although arduous, would be complete, or at least complete enough to allay some fears, at least for a while.

But now, after thirteen months, the fibrous tissue (caused by the large quantities of previous radiation) does not allow this wound to close. About a month ago, I accompanied you to yet another appointment with the amiable surgeon, and he allowed me, as usual, to don gloves alongside him and examine your surgical site up close. A yellowish mass hung in that cavernous and fleshy space, and I watched as he expertly removed it with a small disposable scalpel, dropping it into a formalin container for immediate transport to the lab for biopsy. He looked at me and shook his head—neither of us liked the look of that unnatural-looking tissue. The biopsy was positive for adenocarcinoma.

The biopsy behind us, an MRI does reveal a mass, unidentifiable and not completely quantifiable, but it’s there. At the wound specialist’s office today, I peeked into the wound alongside the nurse as she cleansed and repacked it. That yellowish color deep inside there is disturbingly similar to the color of that mass removed by the surgeon not that long ago. It screams “cancer” as I inspect it.

How do I communicate to you the gravity of this finding? How do I tell you that the wound will most likely never close? How do I find the words to say “I’m sorry” and “I’ll stand by you no matter what”? You have been through so much, shouldered such burdens, patiently accepted each test, each surgery, each probing scalpel, each exam. How do I convey to you that this road will not ease up, but will necessarily become even more arduous? Chemotherapy is an option, complete with hair loss, abnormal blood counts, nausea, discomfort, and even more appointments. You will have to suffer even more indignities, more exams, additional doctors, new treatments.

If this is hard for me, how is it for you? How will you cope? Will your preoccupations and worries get the better of you?

I stared into this gaping wound today as if into an abyss, like looking into a hellish crystal ball with a window to your future. The tea leaves do not sing of sunny days and an end to your suffering. The prognosis cannot be good, but my ability to support you on this journey---my inner strength---it cannot waver. If it does waver, it is out of love and a deep respect for your humanity, and the difficult road which you will ultimately walk alone.

Sunday, February 12, 2006

Responsibility and Attachment

The weekend has delivered a satisfactory feeling of letting go of the vicissitudes and challenges of work. Patients still cross my mind at most any time of day---the middle of the night being the worst, of course. Luckily the hours of lost sleep while ruminating over patients are relatively minimal. I wish I could say the same for the hours of stress.

I sometimes wonder what it would be like to have a job wherein the end of the day actually ends the sense of responsibility engendered by that job. Who can claim to really let it all go when they punch that clock or close that office door? Writers? Teachers? Clerks? Lawyers? Cab drivers? Chefs? Dishwashers? Scientists? It's clear that as the level of responsiblity and "ownership" of a job increases, the power of that job to bleed into one's private and personal life grows. Clearly there are jobs where it must be relatively easy to walk out that door and not give it another thought until the next morning at nine, but it's been years since I had one of those and I sometimes long for that ease of detachment.

For better or for worse, my job is about building relationships, and when relationships are encouraged to grow, attachment and caring also bloom. I'm sure that most people would agree that when one's work involves others' health, well-being, and perhaps actual survival, it's pretty damned difficult to detach oneself from the proceedings. When a patient is failing; when addiction takes hold anew; when death seems more imminent; when failure of the system seems to mean certain death or loss for a family or individual---those are just some of the moments when one's psyche cannot easily let go. From a Buddhist perspective, detachment from outcome is recommended and encouraged, but I cannot help but sometimes feel twinges of pain at the most inopportune moments of personal and private time.

Someone called me the other day to say that her electricity and gas were being turned off. What could I do? She may have AIDS, but the apartment she's staying in---and the bills for all of the utilities---are in someone else's name. I couldn't write a letter of medical necessity for that reason. I did have a wholly unreasonable mental image of her and her two children and dog coming to stay at my house for a while but I disabused myself of that image quickly. How many times have I toyed with the notion of bringing a patient home for a weekend? More times than I would like to admit, honestly. (I actually understand that one of my previous coworkers actually did just that a few years ago---now that's bringing your work home!)

Sunday evenings often bring a sense of foreboding, the deep knowing that at 8:30am, the pager will begin to buzz, the cell-phone ring, the list of unfinished tasks and demands quickly mounting. There is a melancholy sweetness to the length of the evening and my desire to lengthen it, to trick my mind that the hours are moving more slowly than they really are. As bedtime approaches, I feel a tightening somewhere deep inside me, a gearing up, getting ready for the fray. It's so difficult to let go of this state of relative detachment that the weekend has allowed to occur. Can I manage to be a witness to my day and its stressors without actually inhabiting them? Can I ride the waves but not be pulled under? That is the ubiquitous challenge, the constant emotional task at hand, the test of one's mettle. Whether I am up to the task is not only a day to day challenge, or even an hour to hour challenge. Every moment is an opportunity, and my desire is to seize those moments as often as I can. It's a matter of survival.

Saturday, February 11, 2006

End-of-Life Questions Strike Again

One of my most beloved patients is struggling with a recurrence of cancer that is giving him and his wife (and the entire care team) a run for their money. While I strive to keep him comfortable and at home, with as few horrible symptoms as possible, his current palliative chemo regimen is a major challenge. After managing to have him urgently evaluated this week for a fever and dehydration, it turned out that his white blood cell (WBC) count was so low that a virulent infection had raced through his blood and challenged his ability to survive. Before he lapsed into semi-consciousness, he and his wife signed a DNR (Do Not Resuscitate) order so that, in the case of cardiac or respiratory arrest, he would not receive the violent compressions of CPR or other heroic attempts to save him.

The evening of his admission to the hospital, the patient's wife received a late-night call from the attending oncologist who said that the patient's blood pressure was almost non-existent and they could not give him medication (vasopressors) to raise it as he was a "DNR" and raising the BP with meds would be considered a form of resuscitation(!). Needless to say, she was shocked, and the doctor agreed to administer fluids which might increase the blood volume enough to raise the pressure to a level supportive of life. Luckily, the fluids worked and he lived through the night, but the issue of what "DNR" really means was raised.

The next morning, when I learned of these calls to my patient's wife and heard that medications had not been used due to his DNR status, I was non-plussed, and immediately contacted the primary physician, who could also not believe what he was hearing. When I finally made it to the hospital, I met with two residents working under the oncologist who made the original call to the wife, and they reiterated that giving vasopressors was considered a form of resuscitation. I argued that this was not within the generally accepted definition of DNR orders, but they insisted on their position and I urged the primary physician to bring this issue to the head of oncology as soon as possible.

Decisions regarding end-of-life care are difficult enough, but when nuances like those described above are not fully communicated to the family---or agreed upon by members of the medical and nursing teams---trouble is afoot. I acknowledge that the oncology team may very well be technically correct in their assertions, but that does not preclude the fact that most individuals and families who choose a DNR order do not know exactly what they are signing for. From this experience, I suggest to anyone considering signing such an order, make sure you also have a living will or other document stating exactly what your express wishes are, including CPR, intubation, IV fluids, antibiotics, and other treatments encountered during serious and critical illness.

I will make sure that this issue is revisited ad nauseum within my workplace until we can identify the facts of the matter. For my part, I'm thrilled that my patient lived through that night, and that the conversation regarding what consituted proper care for him under the circumstances was not conducted post-humously.

Thursday, February 09, 2006

Telling It Like It Is

Some of you may have been lucky to hear some of the speeches given at the funeral of Coretta Scott King on Monday. On my way to an early morning appointment with my chiropractor, I was glued to the car radio as Amy Goodman of Democracy Now! played excerpts from speeches by Reverend Dr. Joseph Lowery, Jimmy Carter, Maya Angelou, and Bernice King, the daughter of Martin Luther King, a powerful preacher in her own right who spoke of the cancer of violence which riddles our society. The Huffington Post has highlighted the brilliant audacity and chutzpah of the speakers on that day, especially Reverend Lowery, who lambasted the Bush Administration for their deception, conservative policies, and disingenuous abandonment of people of color. The broadcast on Democracy Now! brought me to my figurative knees, and I sat crying in my car before I entered the chiropractor's office, my outrage and desire for social justice sparked by the powerful words coming over the airwaves.

These are crucial times, dangerous times. We are a culture on a knife's edge, a world overtaken by misdirected anger and growing intolerance. My small part in this struggle for justice seems infinitesimal, but I know that what we each singularly do on the ground is an important piece of the larger picture, even as a tide of brutality and hatred seems to engulf so many around us. We can only stand firm and hold our ground as those waters of anger rise. We will not be drowned.

Wednesday, February 08, 2006

Keeping Up the Pace

Keeping up the pace is the challenge. The distress calls keep coming, and it makes me wonder what all the people do who don't have someone like me to look after their healthcare. Some of them get by, some get worse, some simply succumb. It's a rough world out there when you're sick and the system works against you, often thwarting your very efforts to seek the care you need.

Sometimes the advice comes that I should not work so hard, not care so deeply, not do as much for my patients. Yes, there are places where I do indeed draw the line, but what do I do when my patient's wife calls me in tears? She is at work in the next state, her husband needing desperately to get to his oncologist's office for assessment of some nasty post-chemo symptoms. And then a lonely and isolated woman with a new arm fracture calls, weeping over her inability to get to the pharmacy to fill the prescriptions given to her at the ER. Also, her sling has come undone and she can't manage to restore it with only one working hand. She has no family, no friends, no car, no money. Shortly thereafter I arrive at the home of another woman--her new home in a trailer park with her husband. Her respiratory disease is obviously at its worst right now. She looks terrible and I have to convince her to go the ER.

Each call generates documentation of the call itself, not to mention the further activities or interventions necessitated by that initial call. Med refills, a letter, a conversation with a doctor, a new symptom, a relapsing cancer, a mammogram needing follow up, some nasty looking bloodwork. It's just a miasma of need and preoccupation, never-ending and continually spiralling into even more to do. The lists and Post-Its multiply---multi-tasking ad nauseum. What's a poor nurse to do in the face of such overwhelming odds and endless tasks? This evening's remedy: dinner out with my beloved, then a movie. Simple mid-week pleasures to soothe a furrowed brow, a tired mind, a heavy heart.

No one told me to do this. I am here of my own free will, this path is of my own making, of course, and I'm free to alter my trajectory at any time. By choosing to continue on the current path, I choose to face the learning and growth available to me at this time, in this context. And in this very context, I struggle to remain sanely afloat. When the time comes, I'll choose to relinquish this role, but for now its hold on me has lessons within its chaos, and I have something to give. So I remain in the well-worn groove which does indeed fit quite nicely in so many ways. As Michelle Shocked once said, "The secret of a long life is knowing when it's time to go". And at this moment in time, there's nowhere to go but here.

Monday, February 06, 2006

Putting Out Fires

Putting out fires---that's really what I do all day. Out of eighty-two chronically ill people, there's always someone in need of succor or assistance. This one's out of the country and her antiretrovirals seem to have been confiscated by customs when her son tried to mail them to her from the U.S.. This other one is so depressed she couldn't muster the energy to call me to tell me she's out of antidepressants and feels like dying. That one over there seems to have recurrent cancer and the surgeon is slow to respond to my calls. Then the one in the corner just can't seem to pay attention long enough to move forward, consistently taking a few steps back just when I think there's some evolution in the air.

The beeper, the cell phone, the voicemail, the emails---it all cascades through the day and I ride the waves of stress, my equanimity occasionally the victim during the melee. Multiple Post-It notes litter my desk (and pockets); the Palm Pilot is crammed with reminders, appointments, alarms, and notes to jog my taxed memory. It's like juggling dozens of balls covered with discarded gum, some balls sticking to my hands, others bouncing beneath the desk. I stuff a few in the file cabinet but they seem to reproduce while I'm in the bathroom catching my breath and relieving my screaming bladder.

Moments of respite do occur: I stop amidst the torrent to stare at Mary's photo on my desk, a flutter in my stomach as I think of her. I visit a former patient who recently returned from a trip to her country of origin. She gifts me with a lovely pair of leather sandals, the perfect size for me. She tells me that God put me in her life's path. Perhaps we'll go out for pizza next month. I visit another patient on the way home. We have a very congenial relationship; he records movies onto DVDs for me. Today's gift was a pirated copy of Ground Hog Day with Bill Murray. Then I help him set up his new police scanner. (Did they talk about squelch knobs and MHz in nursing school?)

Coming home is the balm my soul has cried out for all day. Mary and I massage each other's backs, take a hot bath, fix dinner, feed the dogs, and chat about our days. Nothing could be finer....

Tomorrow the circus resumes, followed by an evening of teaching at the community college. How long 'til Friday?

Sunday, February 05, 2006

I Guess I've Started

As I ponder the breadth of Digital Doorway's subject matter and wonder whether I should begin to address political and economic issues that concern me in this venue, the nurse at The Mote in the Light raises the oh-so-timely issue of the newly proposed cuts to Medicaid. She writes:

"Let's hear it for the US Congress, who has decided that so many poor people are benefiting from Medicaid that it must be cut. Our pockets are being assaulted too heavily by these poor and disabled citizens and, by God, something must be done.

"So they have now given states the right to cut services and eligibility; to require copayments from people who already can't pay their bills because "this will reduce utilization" (watch out, all you ERs)........to offer the poor "health savings plans" (Can you figure yours out? If so, can you come explain them to my impoverished families who have never had any practice budgeting money? Thanks.). In short, they are holding poor people responsible for using the entitlement they were granted and actually used. Fancy that."


As a healthcare provider solely for the poor, this reality of further cuts to Medicaid while oil companies and Big Pharma post record profits is absolutely infuriating. We must bear in mind that Medicaid recipients have already lost dental and eye care, as well as various other "luxuries" like diabetic shoes and certain types of durable medical equipment. No one in Congress seems to think that dental cleanings are important for poor diabetics whose risk of complications from poor dental health is astronomically higher than the average person's.

I've always felt that the health insurance package enjoyed by members of Congress should be identical to that of Medicaid recipients (not that wealthy lawmakers can't afford to buy their own eyeglasses) just to keep those denizens of the Capitol on their toes vis-a-vis healthcare disparities.

The War on Poverty is really not a war on poverty itself---it is a war on the impoverished. A government's responsibility is to care for its most vulnerable citizens, but this government---in particular the current Administration---seems to have no problem with eviscerating social programs in the interests of economic expansion for the wealthy and the aggrandizement of its own twisted self-image and power consolidation. Medicare Part D was like writing a blank check to the pharmaceutical lobby. No Child Left Behind? A new way to castigate and punish poor neighborhoods for their schools' poor performance. The Patriot Act? I can't even stomach the idea of writing about it.

I see the effects of the government's inability---or refusal---to adequately care for its most vulnerable citizens every day. Most of us average citizens cannot even imagine what happens behind closed doors in the halls of Congress, the deals that are brokered, the die that is cast by those whose interests center upon their own political futures, lining the pockets of those who need it the least. Jack Abramoff is only the tip of the iceberg, and we can rest assured that for every operator in the halls of power who is actually caught in the act, there are dozens more whose cold-hearted subterfuge remains under the radar.

So, those of us struggling against diseases of poverty and economic disparity will continue to do so in the face of whatever odds are stacked against the poor and politically powerless. As maddening as this world may seem, the cards continually seem to be marked in the interests of those who least need to win the hand. But someday the winning streak of the wealthy and powerful will have to end, and you all know what has always been said about the meek......

Saturday, February 04, 2006

Don't Get Me Started, Part Deux

Continuing to think about starting another blog, I ask myself why I feel the need to separate my opinions about politics, economics, foreign policy, etc from my thoughts and reflections on work, love, health and healthcare, life, spirituality and life in general. That is an idea worth pondering. Perhaps I feel that my posts about my patients and my work dilemmas would be lost in the fray, diluted by the other overarching questions about the sorry state of our union and its relationship to the greater world.

This may seem like so much perseveration about nothing, but in this chaotic and information-drenched post-modern world, taking on the project of yet another writing venue---and subsequently adding to the plethora of information already polluting the blogosphere---is worthy of reflection.

If you are a regular (or irregular) reader of this site, would you be pleased to see a wider array of posts that would include thoughts on politics and the like, or would you rather be able to click a link to a separate site for that? Any comments greatly appreciated, dear Readers.

Friday, February 03, 2006

Don't Get Me Started

I have now been blogging for thirteen months, concentrating mostly on my emotional, spiritual, and professional life. During this time, I have consciously eschewed writing directly about politics, the war in Iraq, and other sociopolitical and economic issues. There are so many people writing and blogging quite wonderfully and eruditely about these subjects, and I have felt strongly that my writing would simply pale in comparison. That said, a persistent and troublesome desire to record my thoughts on "politricks and the shitstem" (as Bob Marley called them) has again resurfaced, and I am reconsidering the creation of a blog simply as a place where I can vent my frustrations with the state of the world, the Bush Administration, the war in Iraq, the War on Terror, the Injustice System, and the duplicitously vile nature of American government and diplomacy.

Deciding whether I have the time and energy for such an undertaking is paramount. I also must consider whether or not my thoughts on these subjects, a) have some traction and interest for others, b) are worthy of such energy output, and, c) are a compelling reason to do such a thing. The jury is still out, but I thought I would share the idea......

A possible name for said imaginary blog---Don't Get Me Started---has been on my mind for some time. I'll think on this for a while, maybe even write a few potential entries, and then decide whether or not to take the plunge and start another site. If any of you out there have advice or input on the vicissitudes and rewards of running more than one site, please do chime in.

Until then, stay tuned.....

Thursday, February 02, 2006

Violent Speech

During a team meeting today, my boss used several phrases which disturbed me, causing our resident PhD psychologist and I to exchange a number of puzzled looks. In describing our new approach and strategy to patient care and data management, my boss used the terms "scatter-shot", "shot-gun" and then "ammunition" to illuminate his point as to how we would approach several problems. Why such unnecessarily belligerent verbiage, especially vis-a-vis a discussion of compassionate and thorough healthcare?

In these troubled times of war and escalating violence at home and abroad, speech which uses violent images to drive home salient points raises red flags for me in many ways. While not wanting to rely on the unwritten rules of political correctness to dictate how people speak, this type of speech is disturbing for a variety of reasons. Were my colleague and I the only ones to react negatively to these turns of phrase? Was everyone else unphased by such usage? Are most people desensitized to such language? Is it really that ubiquitious? Why did I not feel comfortable to speak up and request a new vocabulary to describe our work?

For many years, Mary has actively worked to change the phrase "kill two birds with one stone" to "free two birds from one cage". It communicates the same idea but substitutes more open and liberating language, eliminating needless images of killing from everyday speech. How easy to remedy!

This culture is brimming with violence which permeates every aspect of our lives. Violence-free speech is one way that I choose to actively decrease the negativity which is circulated in the world. Books by two of my favorite authors and spiritual leaders---His Holiness the Dalai Lama and Thich Nhat Hanh---sit at my bedside, both books focusing acutely on decreasing negativity, increasing love, and expanding compassion. If there is no other task worth doing in the world,
I know that this work---the spiritual work of loving---precludes all other tasks before me in this life.

The next time I am confronted by unnecessarily violent speech, I commit to speaking up, speaking out, and gently redirecting that negativity out of a desire to further the cause of gentle compassion in the world. After all, as the saying goes, silence is complicity.

Wednesday, February 01, 2006

Family to the Rescue

Two patients of mine have been (at least temporarily) rescued from dire situations. One patient has been living in various local halfway house-type institutions for the last two years, and the other was recently evicted from public housing for drug-related complaints, as previously recounted here.

Magically and synchronistically, both were whisked into relatively comfortable situations this week, coupled with strongly-worded caveats from their respective family members that if they don't tow the line and behave, they will be unceremoniously ejected into the street. This type of tough love is necessary for these two men, both of whom have struggled with addiction, made poor choices, and are wont to make further poor choices when given the opportunity. In the latter patient's case, schizophrenia coupled with addiction has wrought an even greater challenge vis-a-vis the potential for sobriety and stability.

From my perspective, when family begin to take initiative and assume responsibility for their disabled members, my share of the work can either increase or decrease dramatically. The outcome depends a great deal on the family members' ability to manage the client's physical and mental ailments, negotiate the healthcare system, while managing to maintain some semblance of normal home life, especially when young children are involved. Wherein both of these men are people of color, I have found---in a very general sense---that families of color are much more likely to take in (rather than institutionalize) an ill family member. Although this is an admittedly gross generalization and simplification of a multifaceted phenomenon, I think there is some truth to the notion that many non-White cultures---be they Mediterranean, African-American, Latino, or Asian---are much more likely to live in multi-generational households with mentally- or physically-challenged members in the mix. Are there studies of such phenomena? I may just have to find out for myself.

Speaking of families, how likely would I be, for instance, to take in an aging and infirm parent, providing physical care and social support in the final years of my parents' lives? In terms of the Middle-Class White American Dream, having a decrepit elder mar the perfection of one's picket-fence and two-car garage success story is not generally an accepted part of the equation. Middle-class Americans are raised on the isolationist, nuclear-family-centered, self-oriented image of personal success and growth---frequently both emotional and geographic---away from family. The success of nursing homes and assisted living facilities, I believe, is directly born from the idea that we cannot sully our carefully calculated lives with the burden of an elderly family member to care for. As an individual raised in such a cultural climate, I am as guilty (if guilt is necessary) of similar notions, with little thought towards what I would do if one of my parents was left infirm and unable to care for themselves. So many of us keep in the back of our minds the notion that we would find the perfect institution where we could visit our elderly parents with flowers on Sundays, while they were entertained and cared for during the week by loving staff and recreational experts, well-fed, medicated, their every need fulfilled while we enjoyed our regularly-scheduled lives. Do I foresee a similar rosy scenario? Is this realism or denial? Have I not also been enculturated to covet my privacy so much that institutionalization is the only choice for an aging parent?

While doing community development work in the most rural and poor areas of Jamaica, it became very clear to me within the context of that culture that the elderly and infirm were not automatically institutionalized when their care became more needy and complex. Nursing homes are few and far between in a society such as Jamaica, reserved for the truly destitute who are devoid of any known family able to assume their care. However, to describe the scores of abandoned children languishing in the back rooms of the children's wards of many Jamaican hospitals also underscores the fact that even in such cultures where the elderly are apparently honored and revered, devastatingly sad stories of poverty, illness, and societal abandonment abound. Every society is rife with contradictions and conundrums, especially where the care of the poor, ill, young, and old are concerned.

Returning to my New England homeland, it remains to be seen how my patients fare in their new situations with family, and how their families cope with these challenging circumstances. As my position and available energy warrant, I'll help to facilitate proper care, transportation, appointments, medication refills, referrals to specialists, and all of the other tasks which I arrange under the auspices of my workplace. The bulk of the responsibility rests on the shoulders of the clients themselves, who must recognize their predicament, acknowledge their reliance on the kindess and largesse of their families, and behave in ways which engenders further trust and positive relationships, not to mention positive health outcomes. For the moment, I watch, wait, support, and orchestrate as best I can, and watch the family chips fall where they may. Again, as always, there but for the grace of Goddess go I.