Friday, March 31, 2006

If Friday Giveth.....

Ah Friday, that long-awaited day, the gateway to the weekend, bringing a reprieve from the vicissitudes of the proverbial grind (at least for those of us who work during the week). The problem with waiting for this day to arrive is that Monday is just around the corner, and the waiting then gives way to dread and wishes that time would move more slowly on Saturday and Sunday, which it never manages to do.

Another problem: if Friday giveth, then certainly Monday must by necessity taketh away. All of this antipication and waiting for two special days creates a great deal of expectation, not to mention disappointment when the weekend falls short of our desires.

How much do we miss when we spend our energy looking towards the future rather than examining and living in the present? In the past, I've written about the dread I often feel as Sunday evening approached, the need for preparation for the coming work-week looming. On Sundays, the mind begins to wander back to the responsibilities awaiting on Monday morning. The laundry spins, the iron hisses, the lunch is packed, the Palm Pilot consulted, and then, lo and behold, Monday morning dawns with a sense of loss and desire for more leisure and considerably less travail. "Welcome to my working week," Elvis sang (Costello, that is).

Work can define us, it also can confine us. Why do so many of us write about our work? Why are there websites dedicated to those who write about their work? Why do so many people desperately play the lottery in an effort to secure an early and blissful retirement, free of the need for money and sustenance which to a large degree drives our careers and work lives? If we live for the weekend, are we not dead from Monday to Friday? And if we're dead from Monday to Friday, what does that say about the quality of Saturday and Sunday? Even more poignant, what does that say about the quality of those five days of salary earning?

These are purely rhetorical questions which I ask both myself and you, dear Reader, as I prepare for the week's deneoument and the weekend's opening curtain. Will I seize the day and wring as much pleasure and relaxation from the weekend as I can? Most likely. Will I spend too much time ruminating on the week to come? Hopefully not. Will I resent the hours I spend preparing for lecture, writing an exam and studying nursing texts? Probably. Will Monday feel like something was lost, a small death has occured? Perhaps, but my hope is that even a small kernel of excitement can animate an occasional Monday morning, a desire to rise to the challenge and embrace the week with open arms and heart.

A famous philosopher/yogi once said, "Work is love made visible." May my love continue to be visible, even on Monday.

Wednesday, March 29, 2006

Of Train Wrecks and Ghosts

He's alive, but the quality of that life has diminished to a degree almost unfathomable. He sees me for the first time in weeks and says, "I'm hungry and they won't feed me." How do I explain to him how his lower esophagus disintegrated under the pressure of uncontrolled vomiting and that he must be fed directly into his small intestine, bypassing the stomach which now has no connection to his mouth which craves food and drink nonetheless? How do I tell him that his cocaine and heroin addiction, poor self care and choices have finally come home to roost, and that all of the warnings we gave him over the years were real? Can I tell him that he will probably live in an institution for the rest of his life, and that he cannot expect a whole lot more from life for a very long time, if ever? Is it my place to explain that his hands are in large cotton mitts and his wrists tied to the bed-rails because, in his paroxysmal and violent detox from cocaine and heroin, he actually ripped a chest tube from his rib cage, causing further lung collapse and trauma? Yes, he is hungry. His stomach naturally craves food, as do his lips and tongue, but there is no passageway from that mouth to that stomach, that center of our bodies which we use to satisfy cravings of so many kinds. That stomach, lonely without an esophagus, does nothing but drain mucus through a tube inserted through its wall.

Did anyone say train-wreck? It was expected---he had been hurtling blindly down that track for years. But to see the fruition of such self-abuse is startlingly real. Harsh is barely appropriate to describe its glaring severity.

An urgent page interrupts my bedside visit: she is 48 hours clean from crack cocaine and just punched a hole in the bedroom wall. With kids at risk of being removed by social services, she begs for something to assuage her anxiety as she climbs the walls of her mind. She's been doing so well for so long, but the ghosts of trauma past have surfaced once again and she has devolved into practices which we all know will kill her. Eventually. This woman's body craves healing, and we have beaten back the HIV and brought it to its knees, but I know from the visiting nurse's report that she has eschewed her medications for almost a week now. Sure, we'll give her some Seroquel to calm her down, but she must pursue the avenues which I have opened for detox, psychotherapy, and the recovery she so desperately needs. I hurt for her, even as I silently and internally process my profound disappointment and sadness.

Oh, the trauma of broken lives and misdirected grief. The sadness and suffering that permeate these lives is profound. Among so many of us out in the field, a profound wish to "fix" exists, and we run up against our frustrations time and again. These scenes of suffering can wound us as well, driving us to further feats of attempted healing, but also to stress-related illness and burn-out. My mind burns with these scenes, and even after losing twenty minutes of writing on this troublesome computer, I return again to try to record these thoughts before the machine betrays me and my work is lost in the digital ethers a second time.

There are countless stories, and each day brings a scene worth a thousand words and a thousand feelings. This brief interlude before sleep allows me to unload a small portion of the crowded contents of my mind. Yes, human train wrecks walk this earth, as do the ghosts of others gone before them. Some of us chase those trains, some of us chase ghosts, some of our patients are haunted by ghosts as yet unidentified. Human tragedy unfolds, and we are sometimes powerless to change the course of the train as it blindly hurtles towards the wall directly in its path.

Tuesday, March 28, 2006

Lofty Goals, Harsh Realities

I was just re-reading my previous post , realizing how portions of those ancient Buddhist vows are so apropos to my feelings about my work on this earth. For instance, "as long as diseases afflict living beings, may I be the doctor, the medicine, and also the nurse who restores them to health." For obvious reasons, this stanza speaks to my current vocation and my desire to be of service in this world. As grandiose as it may sound, it is really simply a wish, a desire to be a conduit of healing.

These types of prayers/vows reflect, in my mind, a kind of spiritual "best case scenario" in which the person making the prayer is setting his or her sights on the loftiest possible goal. These statements are intentions, set by the individual with full knowledge that none of us mere mortals can be at our very healing best at every moment of every day. My experience has taught me that even the best intentions and deep-seated love can often fall short in the heat of human drama and the frailty of emotions.

A good case in point would be my ongoing relationship with a very loveable patient with a history of substance abuse. I have written about this case before, and throughout 2005 was beaming with pride and the flush of success as this individual's kids stayed in school, chronic diseases under control, and the patient's general lifestyle stabilizing. Sadly, over the last months, the bottom has fallen out and a relapse into cocaine abuse and manipulative behavior has consumed this person's life, the kids missing school and the authorities stepping in vis-a-vis the welfare of the schoolage children. Many red flags have been raised, as has my level of ire as the situation devolves into chaos.

Details aside, my exasperation has been getting in the way of my ability to really be there for this person, and I have found myself avoiding calling the patient and making myself available. That said, in such situations, I have often found it quite useful to step back, take a break, and allow my broken compassion meter some time for maintenance, so that my subsequent visits can be focused on the person, not the aberrant behavior being demonstrated. Herein must enter compassion and its cousin patience.

At times, disappointment in my ability to maintain my composure in the face of my patients' failures to live up to my expectations can cloud my vision of who they are, of their own unfolding process. My cynical "social-worker self" sees addiction, cycles of neglect and poor judgement, seemingly avoidable mistakes and missteps. These perceived errors are easy for me to see, of course, and my agenda--- no matter how well meaning---cannot permanently get in the way of truly seeing with clarity and non-judgement, or else my powers as a stabilizing force for healing and growth are lost.

On Thursday I will visit this individual whose process it is a priviledge to be a part of, despite the moments of anger, disappointment and unmet expectations which can dull my desire to be of service. Withdrawing for a time is often a good therapeutic tool, allowing the client space to solve their own dilemmas and stew in their own juices, so to speak. And then, when the time is ripe, the time comes for stepping back into the fray, leaning in once again, and hoping that, on another day in the not too distant future, more functional and intelligent choices will be made. Until then, compassion and patience must hold sway, and when they are not attainable, a healthy distance can allow those batteries of compassion to recharge. Sadly, there are some individuals who we eventually learn must implode on their own, beyond the reach of our assistance. At that time, compassion can still be front and central, even as the person's certain denouement looms on the approaching shore.

Harsh realities? Oh yes. Lofty goals? Even still. Desire to continue on? No other place to be. For now. Keep oiling that compassion meter.

Monday, March 27, 2006

Bodhisaatva Vows

These vows were forwarded to me by my wife whose blog can be found here.

SHANTIDEVA’S BODHISATTVA VOWS

(bodhicaryavatara, chapter 3)

In the spiritual energy that relieves
the anguish of beings in misery
and places depressed beings in eternal joy,
I lift up my heart and rejoice.

In the goodness producing illumination,
I lift up my heart and rejoice.

I rejoice in the beings who have gained
eternal liberation from suffering.
and I rejoice in those who have attained Buddhahood
as well as in their offspring, the noble Bodhisattvas.

In the ocean-like virtue of the Bodhimind
that brings joy to all beings,
and in accomplishing the well-being of others,
I lift up my heart and rejoice.

To the Buddhas of the ten directions,
I join my hands in respect.
Let blaze the light of Dharma’s truth
for the beings lost in darkness.

To the Buddhas considering parinirvana
I join my hands in prayer.
Do not abandon the beings in sorrow,
but remain and teach for countless ages.

May any spiritual energy thus generated
by my devotion to the enlightened ones
be dedicated to dispelling the misery
of living beings without exception.

As long as diseases afflict living beings,
May I be the doctor, the medicine,
and also the nurse
who restores them to health.

May I fall as rain to increase
the harvests that must feed living beings,
and in ages of dire famine
may I myself serve as food and drink.

May I be an unending treasury
for those desperate and forlorn.
May I manifest as what they require
and wish to have near them.

My body, every possession,
and all goodness, past, present and future
without remorse I dedicate
to the well-being of the world.

Suffering is transcended by total surrender
and the mind attains to nirvana.
As one day all must be given up,
why not dedicate it now to universal happiness?

My bodily powers I dedicate
to the well-being of all that lives.
Should anyone wish to kill, abuse or beat me,
the responsibility is purely their own.

Should anyone wish to ridicule me
and make me an object of jest and scorn,
why should I possibly care
if I have dedicated myself to others?

Let them do as they wish with me
so long as it does not harm them.
May no one who encounters me
ever have an insignificant contact.

Regardless whether those whom I meet
respond towards me with anger or faith,
may the mere fact of our meeting
contribute to the fulfillment of their wishes.

May the slander, harm,
and all forms of abuse
that anyone should direct towards me
act as a cause of their enlightenment.

May I be a protector to the helpless,
a guide to those traveling the path,
a boat to those wishing to cross over;
or a bridge or a raft.

May I be land for those requiring it,
a lamp for those in darkness,
May I be a home for the homeless,
and a servant for the world.

In order to fulfill the needs of beings
may I be as a magic gem,
an inexhaustible vase, a mystic spell,
a cure-all medicine, and a wish-granting tree.

May I act as the mighty earth,
or like the free and open skies,
to support and provide the space
whereby I and all others may grow.

Until every being afflicted by pain
has reached nirvana’s shores,
may I serve only as a condition
that encourages progress and joy.

Just as all previous Buddhas
first gave rise to the precious Bodhimind,
and then just as carefully followed
the stages of the Bodhisattva disciplines.

Likewise for the sake of sentient beings
do I now myself generate the Bodhimind,
and likewise will I train myself
in the disciplines of a Bodhisattva.

They who out of wisdom
have seized the supreme Bodhimind,
praise, glorify and rejoice in it,
that it may grow to fulfillment.

From today I will reap the fruit of life;
having well won the state of man,
today I am born in the Buddha-family
and am now a child of the Buddhas.

Thus in the future I should make every effort
to live in accord with the Bodhisattva Ways,
and never should I act as would bring shame
to this noble faultless family.

Like a blind person fumbling in garbage
happens to find a rare and precious gem,
likewise I have discovered
the jewel of the precious Bodhimind.

Thus was found this supreme ambrosia
to dispel the Lord of Death, Destroyer of Life;
an inexhaustible treasure
able to cure the poverty of all sentient beings.

It is the highest of medicines
to quell the ills of the living,
and it is a tree giving shade
to those wandering on the paths of life.

It is a strong and mighty bridge
by which beings can cross from misery,
and it is a moon to shine in the mind
to clear away the pains of delusion.

The Bodhimind is a great radiant sun
to disperse the darkness of unknowing,
and it is the very essence of butters
gained from churning the milks of Dharma.

For all guests on the roads of life
who would take the very substance of joy,
here is the actual seat of true happiness,
a veritable feast to satiate the world.

Thus today in the presence of all awakened Ones,
I invite every living being to this festival,
giving both immediate and lasting joy.
May the gods and all others rejoice.

Friday, March 24, 2006

Godspeed

In some relatively recent posts, I discussed a patient for whom I had gone above and beyond, arriving at a point of seemingly no return. Having lost faith, I had disengaged somewhat and waited for the toubled gentleman to come find me. His "MIA" status precluded my doing much for him anyway, since even his siblings could not locate him on any given day. His was a sad case of self-neglect and complete disenfranchisement from the system. His role as a human time-bomb was assured in my mind.

That said, he surfaced a few weeks ago, living in a boarding house with his brother, looking cleaner and more well-kempt than he had for some time. I managed to visit a few times, sort out his meds, and begin to make some plans. With his consent, I contacted a facility that I felt would be perfect for him: locked ward, active and compassionate detox protocols, as well as subacute care for his many complex medical needs. After a 25-page fax to said facility, he was refused based on the fact that he could not be admitted as an outpatient. He would just have to get sick and go to the hospital, and only then would they consider him a candidate. Other facilities basically said the same thing, and his sister--agitating for an inpatient stay for her wayward elder brother--was enormously disappointed.

Several days later, my patient arrived unannounced at the clinic with reports of vomiting and abdominal pain. We did a quick assessment and asked him to return in one hour for an urgent appointment. He and his brother (who accompanied him)left and returned at the appointed time. Unbeknownst to me until later, they left after only a thirty minute wait (a very short time at our inner city clinic) and disappeared into the anonymity of the city. I assumed he would call or end up in the ER if things got worse. It was out of my hands now.

Lo and behold, late last week I heard that said patient had been admitted into the ER under the auspices of the Thoracic Surgery service. Unable to glean from the on-line chart the reason for his admission, I went home and decided to follow up the next day. Sadly, the news was devastatingly tragic: it seems that his severe vomiting---perhaps initiated by combinations of alcohol, cocaine, and other substances---has been so severe as to rupture his weakened and damaged esophagus. The entire lower half of his esophagus had burst, gastric contents spilling into his chest cavity and upper abdominal cavity. Eight hours of surgery later, he landed in the ICU---where he is to this day---surprisingly breathing on his own, having torn out his breathing tube in the thrashings of withdrawal. With no functional esophagus, a gastric tube fof feeding, days of unconsciousness, paradoxical breathing patterns and global blood dyscrasias, he is most likely not long for this world.

His sister called me the other day to ask about our discharge plans. She said that she understood he would not be going home any time soon, and she wanted the best care for him. I gently explained that there was a good possibility he would never be back, that he could remain in this state for some time, and that his prognosis for recovery was very slim. (Actually, for an esophageal rupture of this type, mortality is approximately 95%.) We lamented how the facility I had contacted had refused him, that he could not be admitted without first being acutely ill, that he had consistently refused to care for himself, and that she and her other siblings had lost someone who should have been a role model, a family anchor, the eldest of a large group of parentless siblings. It was a poignant moment as we shared over the phone line the very real and singular reality of the untimely demise of a lost soul, her eldest brother.

I do not see this as a failure, per se. It is simply a fact that there are sometimes individuals who cannot be saved from themselves, and no matter what I do, there are circumstances beyond my control as a clinician and human being.

Standing beside that ICU bed, I made my peace with this unfortunate and critically ill man, blessed him on his journey, and prayed that he is not in pain. The rest is up to him and the forces at work as his body struggles for life, and as his soul does the work it must when its corporeal home is damaged beyond repair. As his desperately ill body clung to life in that sterile room, was his soul somewhere above or around me, slightly disengaged from that shell, witnessing from its vantage point the desperate nature of the human struggle unfolding on that bed? I spoke to him in Spanish, wished him well, and took my leave of that body bristling with tubes and the technology of desperate measures. The term "Godspeed" came to mind as I turned away, and the meaning of that term, in that moment, was clear as crystal to me. Godspeed, and blessed may you be on that journey we all must take alone. May you finally be free of all suffering.

Thursday, March 23, 2006

Of Race and Wo/men

Our entire team met today---two sister programs who care for vulnerable populations under 65 and over 65, respectively. Since we share an office, a supervisor, and the same mission with slightly different paperwork and processes, we meet once a month to present cases and hash out organizational and office issues. We also celebrate the month's birthdays with a cake. With 20 employees, each month sees a birthday, with May as the only exception. So we have our cake and eat it too. Monthly.

In presenting my case, I opened by describing my patient, beginning by identifying him as African-American. Similarly, the presenter before me also described her patient as African-American. Following the case presentations, one of our Nurse Practitioners confronted us directly but kindly regarding why we felt the need to let the group know that these two patients were indeed African-American. She pointed out---quite correctly---that we never identify white patients as such when we present them in case conference, those distinctions being used only for "minorities". Ironically, among our patient population, caucasian patients are a vast minority, perhaps 5% of our total caseload, and perhaps 10% of the wider health center where we practice. So why don't we identify them?

Letting this sink in, I immediately realized that her point was incredibly astute, and that we had been called on a subtle but obvious (and unnecessary) "racialization" of our non-white patients. While the clinic is identified as serving a majority Latino population, we agreed as a group that race is only important in a case presentation if the person's race figures prominently vis-a-vis their medical conditions (ie: sickle cell anemia).

Some readers trained in the medical field will possibly react to this story by pointing out that medical/nursing training indoctrinates most of us to present a case thusly: "Mr. B. is an obese, middle-aged Caucasian man with a prior medical history of......" We all agreed that this is part of the larger medical culture, but we also agreed that this culture is actually changing. Within our health center itself, the Medical Director will always question a presenter if the patient's race is included in a case presentation for no apparent reason. We also concurred as a group that within the medical industry, disparities of care do exist which often break down along racial lines, and many studies have shown that people of color often receive different treatment for the same diseases as their Caucasian counterparts. Is this institutionalized racism? It appears to be the case, and there are many providers working to bridge that divide.

Words and labels are powerful tools, and their misuse---or unconscientious use---can be damaging, irksome, or blatantly hurtful. When dealing with human lives which each represent a unique story of family, history, and cultural richness, it is important to define our patients by who they are and by the diseases from which they suffer, not by race, creed, or nationality. Do I need to say if Mr. B. is a Christian or Muslim? Perhaps his cultural beliefs about blood transfusion or organ donation might figure into the conversation due to those beliefs, but if not, let his case stand alone, unaccompanied by unnecessary labels. If we list a patient's race for no reason other than habit, are we simply painting that patient into a box, allowing our audience to pre-judge them based upon a mental/societal stereotype attached to that word, that label?

I learned a great deal from this conversation today, and I took the time to thank my colleague for her honesty and courage. A potential conflict was avoided by a gentle but firm presentation of her concerns, as well as by the open-minded listening practiced by our group as a whole. A learning moment was had by all, and the fruits of that discussion will pay dividends, both professionally and personally.

Wednesday, March 22, 2006

Of Angels and Icing

She has an angel made from white felt on her refrigerator. My name is scrawled in black magic marker across the angel's torso.

"You see," she says in Spanish, "I told you that you were my angel."

She weighs 98 pounds, cannot quit smoking no matter how hard she tries, and has severe emphysema and asthma (Chronic Obstructive Pulmonary Disease). She also drinks a fair amount of alcohol but will never elucidate for me exactly how much that is. Chronic pain plagues her, morphine keeping it somewhat at bay. Hepatitis C lies in wait in the background, and the alcohol that she consumes is like pouring gasoline on a fire.

This physically frail but inwardly tough woman has been hospitalized four times this year alone, and she's been intubated more times than I can count. During all of those intubations, she actually experienced delerium tremens and had to be carefully sedated so that she wouldn't pull out her tubes and IVs as she thrashed violently in bed. Since I've known her, I've had to visit her in the ICU several times, certain that she might never recover, but each time she makes her way back and returns to her two-room apartment in a large senior apartment building overlooking the highway that bisects the eastern part of the city.

Today's visit was prompted by a phone call. "I fell on Saturday, and my knee is swollen and painful." Today is Wednesday. This is a woman who had a complex fracture of the ankle (actually the right lateral malleolus for you orthopedic fans out there) and waited almost a week to call me with reports of "pain and swelling" (a vast understatement). Years on chronic steroids have rendered her bones very prone to fracture, a fact I always bear in mind. Memories of that gigantic ankle with a massive joint effusion sent me driving across town to her apartment faster than you could say "E.R."

The knee was impressively swollen with decreased range of motion, large ecchymotic areas, pain on dorsiflexion of the foot, and a very boggy patella. Unable to reach any of my Nurse Practitioner colleagues or the primary doc, I scribbled some orders on a requisition form, co-signed the doc's name, and told the patient to get her friend to take her for some x-rays by the end of the day. (This particular doc has given me carte blanche to order just about anything in his name---an unspeakable luxury and honor.)

So, have I earned my white felt angel? I'm not certain, but if that characterization of me keeps her engaged and facilitates improved self-care, I'll be almost anything. Am I a devil when I reproach her for drinking and smoking and avoiding care for weeks at a time? Perhaps, but a devil with a purpose---avoiding untimely death and avoidable suffering.

Angel, devil, pain in the ass, it doesn't really matter. What the patient thinks of me can be a nice fringe benefit, but the outcomes of improved health, increased adherence to treatment, and better quality of life are what we're really striving for. Has she quit smoking? No. Does she still drink? Yes. How many hospitalizations this calendar year? Four. Is that perfect? No, but at least she called today. Those white felt angels? They're icing on the nurse's cake.

Monday, March 20, 2006

Mixed Emotions on Monday

Monday morning arrives, bringing with it two more large windows next to my desk smashed into splintered crystal patterns. We've spent hundreds of dollars in glass replacement this calendar year alone. Ironically, the kids who are doing this probably have parents or grandparents who receive care from our health center. Do we need bars on the windows, or no windows at all?

The next shock of the morning reveals that one of the residents involved in the community medicine program at our clinic died this weekend from consequences of a very minor outpatient surgery. The clinic is reeling from this sudden and unexpected death of someone so young and vibrant. The group of residents cancelled their clinic hours and are huddled en masse for an impromptu memorial service while they await the arrival of the young woman's family from a distant state. There are many ashen faces today.

At the hospital, I visit with my patient with relapsing rectal cancer of whom I have written previously. He weeps as I lean over his bed, saying that he might as well die as face one more week stuck in the hospital, a further stay in a rehab facility looming on the horizon. His usual stoic demeanor has cracked and he expresses some deep feelings which are plaguing his soul. The ambulance drivers pack him off to radiation on a stretcher, and I watch his emaciated face fade down the hall. We wave to each other wanly.

I also learn that a troubled and addicted patient has landed in the ICU with an esophageal rupture. His avid cocaine abuse, uncontrolled diabetes, and very poor self-care are coming home to roost. The prognosis is poor, since large amounts of vomitus leaked directly into the pleural space around his lungs before he made it to the ER. I knew he was time-bomb, but I thought I might have lengthened the fuse a bit. I know it's not a failure on my part, but there's a little ache in the heart when these tragedies occur on one's watch.

A call on my cell-phone brings the welcome news that my wife has landed a job as director of a senior center just across the park from my office. I'm thrilled, and visions of summer lunches in the park grace my mind's eye.

The happiness from this welcome announcement is then subdued by a message from someone at the community college that there has been a complaint against me which needs addressing. In that moment, I realize that my plan to let go of my adjunct teaching position in May is an excellent decision to which I will adhere enthusiastically with a bittersweet tinge. I feel crestfallen.

The day ends by bringing my wife flowers---yellow roses---and meeting for a quick meal to celebrate her success. The dogs, music, the cozy house, the roaring fire, all assuage the troubled and somewhat heavy heart that accompanied me home this evening.

Friday, March 17, 2006

Trauma

Helping out in the clinic today, I served as translator and nurse for some of the docs at the health center. One doctor asked me to accompany her into a room and provide translation for a visit with an 11-year-old girl and her mother. "I think it's a family or psychosocial situation", she told me as we opened the door of the exam room and stepped inside.

A lovely and sad-eyed eleven-year-old Latina girl sat on the exam table, clutching her large zippered school folder in her lap. She would clutch that folder as if her life depended on it for the duration of the visit. She wore big fake gold earrings with her name in fancy script across each one. She was dressed in clean clothes and shoes, her hair nicely combed, and pointy black leather shoes on her small feet.

The young girl's mother sat in one of the chairs, a baby in her lap (her granddaughter, I believe). I noted that the mother and baby were both quite disheveled and unkempt in comparison to the prim and proper girl.

The doctor, who speaks little Spanish, asked the girl questions in English. The girl, who prefers Spanish but speaks and understands English fairly well, would understand the doctor but look to me for translation. The mother was completely monolingual and relied upon me entirely for translation. The baby played with a dollar bill and punctuated the proceedings with messy sneezes and dubious glances in my direction.

The story seems so common. The mother, daughter and nineteen-year-old son live in a small apartment along with the mother's aunt and the aunt's thirty-something son. It's a dangerous neighborhood, which could describe most of the neighborhoods in our little city which shall remain nameless.

The entire household was asleep when there was a banging on the door just after 10pm two nights ago. The police burst into the apartment, demanding to see the 19-year-old, stating that the household was under investigation for the boy's alleged distribution and sale of narcotics. While the mother demanded a warrant or other reason for this intrusion, she and her son were handcuffed, the mother knocked roughly onto a chair. As the aunt and her son entered the living room to see what the commotion was, they too were handcuffed, the aunt being knocked to the floor by one of the officers. The unfortunate and sensitive eleven-year-old, having woken from a deep sleep, also entered the living room to be with her mother, frightened by the loud voices and nasty language of the police officers. She was summarily handcuffed as well, the mother begging the officers to leave the young girl out of it. They ignored her pleas.

Mother and son were taken to the police station and questioned, the other three remaining at home in fear, very shaken by these events. For two nights, the young girl has been unable to sleep. Suffering from migraines at an early age, she already takes a nightly medication as a prophylaxis against the dreaded headaches, but the soporific side effects of this medication were no longer providing her any feeling of sleepiness. Instead, hypervigilance, fear and anxiety now rule her days and nights, as this young innocent schoolgirl with straight A's and a sad smile tries to make sense of such an invasion of her world. Her concentration shot, her sleep cycle disturbed, her fears awakened, she is in post-traumatic stress and frightened of the world, jumping at the slightest loud noise, terrified of anyone knocking on the door. Thus this urgent visit on a Friday afternoon.

If an 11-year-old witnesses the handcuffing of her mother, that is fear-inducing enough. Being handcuffed herself and witnessing the callous and inhumane treatment of her family in their own living room by large, cursing white police officers is nightmare material indeed. This young girl was traumatized, this family's constitutional rights may have been violated, and the entire family thrown into emotional disarray. Whether the young man in question was actually selling controlled substances and is an addict himself is beside the point. The tragic violation of the family home and the loss of innocence and safety experienced by this child was paramount in the eyes of the doctor and I as we listened.

There is a War on the Poor. You can call it a War on Drugs, a War on Poverty, or a War on anything that is not "family values", but the treatment suffered by this family---and this young girl---is only a symptom of a wider social syndrome. Where is the "value" in such contempt for human dignity?

I was moved by this story, enraged, saddened, but not disillusioned. I cannot be disillusioned because I have no more illusions about the nature of law enforcement, or the place of the poor within the Machiavellian machinations of the State. In these times, such actions and tragedies abound, and not only do we propagate them here, we export them to other countries as well. For all the trauma experienced by this young woman, there are countless more in Iraq, Afghanistan, and beyond, who have experienced trauma which might destroy the souls of you or I. Indeed, many spirits are crushed by torture and rape daily, and the lion's share of this brutality is actually done in our name, financed by the taxes which we so blindly and trustingly pay.

It can be a sad state of affairs, this being human. Why can we not live up to the moniker "humankind"? Why can we not be both human...and kind? And where is that wind in which the answer was said to be blowing?

Wednesday, March 15, 2006

Consternation

Her anxiety prevents her from getting on a public bus and safely and confidently navigating the world. Among other things, she witnessed the gang-style murder of her husband a number of years ago and the subsequent alcohol abuse has impaired her brain.

The only reason she is in a psychiatric day program now is because we were able to apply for a "Prescription for Transportation" from Medicaid for that specific address, as well as other places where she regularly goes for medical care.

That said, in order to take advantage of this transportation service, one must call at least 24 hours in advance. The call must also be placed before 2pm. If you get sick after 2:00 and need an appointment the next day, you're on your own. Oh, and sometimes the taxis contracted for the rides don't show up, but if you miss a ride, you're also out of luck.

Are there allowances for urgent appointments? No.

Are there allowances for next-day appointments booked after 2pm? No.

Can the person be sent to a facility where a prescription for transportation has yet to be submitted? No. And the submission and approval process takes weeks, even if your new chemotherapy regimen is beginning on Monday and you have no other resource for transportation.

A case in point: I receive a call from the day program that my patient has a three-day-old laceration on her finger that seems to possibly be infected. The finger is cold, dark, and she has lost feeling in parts of the digit in question. Can we see her today? Sure. How can we get her to the clinic when her transportation will only take her to the pre-ordered destination and no other? Beats me.

I hem and haw, clear my throat, tap my fingers on the desk, roll my eyes. Does the day program have taxi funds? Stupid question. Does the patient have money for a taxi? Stupider question. Could the patient take the public bus? Even stupider question, unless they could give her a few milligrams of Valium first. Call an ambulance? Let's see---$800 in taxpayer money for a lacerated finger that isn't even bleeding. What's a poor Nurse Care Manager to do?

I check my schedule. There's a forty-minute window, at best. I race across town and pick her up at the day program and bring her back to the clinic. After a cursory examination, I pull a doc into the room and have him take a look. He agrees with my assessment: no infection, no need for steri-strips. She may have cut a superficial nerve and may or may not regain all sensory function. Keep the knuckle supple and don't immobilize the finger. Bacitracin and Band-Aids and keep it clean. Watch for decreased sensation or change of color or temp. I pack a goodie bag with the necessary tools for home self-care.

Driving her to her house in the next town, we chat amiably. We've known each other for years. The first time I met her, she was so drunk she blacked out the whole visit and never recalled that it happened. A rich history, and a significant recovery from the brink of self-destruction. I give her a gift that I had for her in the backseat of my car---new Tupperware for her to pack her lunch in for her day program. She beams in the passenger seat.

So what about all of those other people with no cars, an inability to use the public bus, lack of reliable friends and family, and urgent issues in need of urgent attention? Your guess is as good as mine.

The poor suffer in so many ways, and we often mistake their suffering for a character flaw. I put out a small brush-fire today---no big deal, but it's symptomatic of so much more. How many proverbial fires burn out of control in other unknown homes, simply for lack of access to something as simple as a ride, a friendly ear, something taken for granted by so many of us? For many, the fire never goes out, and life is one long urgency. For others, the fires are certainly of their making but seemingly beyond their control to stem. For still others, the fires are simply a matter of daily life, and the lucky few are blessed enough to find a way to assuage the hungry flames.

Saturday, March 11, 2006

Contrasts and Ironies

Warm sun and milder temperatures herald promises of Spring and Summer to come. The sun is warming the soil, and so many of us will use this blessing as an excuse to go outside, clean up the yard, hastily beginning the process of easing winter's stranglehold on our world. The bike path will probably be jammed with bikers and walkers today as a sense of "carpe diem" sends the vast majority towards the sun, like flowers searching for their cosmic fix. The dogs pine for a walk as I try to write---they also get Spring Fever of the canine variety.

Some of my first thoughts of the day turn toward my two hospitalized patients, both struggling with cancer, both sealed in their respective hermitages, cut off from fresh air and the outside world. I think of the hospital where I volunteered in Jamaica, where an ocean breeze constantly blew through the wards, the windows open almost year-round, shuttered only during the rainy season and at night when the cool air might cause a shiver, and when "duppies" roam the earth.

The contrasts abound: patients sealed in "therapeutic" environments where multiple antibiotic-resistant organisms thrive, colonizing stethoscopes, equipment, furniture, and clothing. These critically ill individuals go to busy hospitals to "rest", with vital signs taken every four hours, multiple specialists, doctors, nurses and therapists interrupting sleep at all times of day and night. Televisions blare, the intercoms blurt out their coded warnings, call bells ring, IV equipment beep out warnings of occluded lines and bubbles. Don't even mention the food, the bane of many a hospital patient's existence.

We are surrounded by contradiction and contrast: malignant and benign, DNR and Full Code, regular diet and NPO, remission and relapse, acidosis and alkalosis, inpatient and outpatient, the quick and the dead.

Some patients resign themselves to illness, embracing its limitations as a new baseline for living, fatalism sometimes overcoming yearnings for the miraculous. Others see illness as a call to arms, a formidable foe with whom one will grapple for supremacy over one's body, as well as the very quality (and quantity) of that body's life. At times religious belief and spiritual zeal will fuel that fight for life and against the ravages of illness. At other times, I've witnessed faith assist a person in accepting illness as par for the course, no fighting necessary, the mortal struggle removed from the equation.

I am often moved by the contrast when I leave the office and head for home. It's not guilt for leaving my patients in their lives while I return to mine. It simply is acknowledgement that while they struggle for life, battle against illness, and live in the wake of trauma, I return to my cozy home and leave those struggles behind me. While some of them may never leave my mind entirely over the course of a weekend or a vacation, their lives continue whether I am at their side or not. No one has ever insinuated that I don't deserve to go home and rest. On the contrary, many patients urge me to take care of myself, recharge my batteries, and return to the fray refreshed and eager to continue. It just reminds me that my patients' struggles don't commute---they're 24/7.

Just yesterday, I was visiting the rehabilitation hospital where my patient with throat cancer is recovering from a very serious cancer-related infection. I observed as he took part in group physical therapy, intermittently applauding and joking with him and his fellow patients as they tossed bean-bags and honed their fine and gross motor skills. Unable to speak, he waved me closer as I prepared to leave, looked deep into my eyes, smiled, and mouthed "have a nice weekend". Due to my poor lip-reading skills, he had to repeat himself several times, but I eventually caught on, took his hand, and wished him well, hoping that he would have many loving visitors. Our handshake was a lingering one, and then I took my leave, walked out into the light rain, and looked back at the windows of the institution temporarily housing this gentle and kind soul. He may be locked inside and I may be free to roam, but his spirit is as free as mine, and part of him left with me, and I carry it with me still. It lives in my heart, and no physical boundary can dissolve the strings of compassion which connect us all.

Thursday, March 09, 2006

The Journey Continues

I arrive at the hospital to visit my patient. The ID Team (Infectious Disease) is gathered around his bed, poking and prodding, examining. It's right out of a movie or TV show: the big honcho ID doc surrounded by three residents who all give their input about the case. My arrival, which is not always altogether welcome in such a high-powered medical scenario, is greeted with surprising deference, and my input and ideas are readily accepted. I have a good working relationship with three of the four, which greases the interdisciplinary wheels. We discuss the case, and I do my best to connect personally with my patient, trying to assuage the clinical feeling of this little tete-a-tete. Luckily, one of the residents speaks Spanish and had put him somewhat at ease before I arrived on the scene.

This is one of the challenges in a teaching hospital---residents and medical students need to "round" with the docs and test their mettle, honing their skills of assessment and diagnosis. The problem for the patient is that there are many, many cooks in the kitchen, a plethora of examinations and assessments, and a literal parade of strangers traipsing in at all hours of the day and night to do their thing, interrupting naps and my patient's only diversion, the Spanish-language soap operas, or "novelas". If the patient does not speak English, all of these strangers seem even more foreign when communication is so minimal.

When a patient is as complicated as mine: HIV, diabetes, a non-healing wound, actively invasive and non-operable cancer, as well as previous TB with underlying pulmonary disease, the number of specialists and doctors involved is dizzying, and it's part of my job to keep the patient's psychosocial needs front and center, as well as feed the team the information which I have gathered over the last several years of intimately connected nursing care.

As they take their leave of the bedside, I notice that---typical doctors---they leave a trail of used exam gloves, gauze, forceps, and other detritus for the nurse to clean up. Nurses began as ersatz handmaidens for doctors, and that attitude persists to this day. It wouldn't take much effort for them to clean up a little as they leave, but the experienced doc is not only teaching these new docs the art of medicine, he's also teaching the art of being a doctor, which unfortunately includes ignoring the needs of nurses, using nurses like maids, and sweeping on to the next patient with a sense of self-importance and circumstance. I recommend seeing the movie (or original play) "Wit", starring Emma Thompson. It is an amazing illustration of the inhumanity (and humanity) of illness, doctoring, the experience of the ill during institutionalization, and the conundrums of modern medicine.

For now, the challenge is supporting my patient as he begins to face the ever-expanding and changing landscape of his illness. He is beginning to grasp that the cancer will not go away, the (larger than) fist-sized wound in his bottom will never heal, and his level of debilitation and dependence will only grow. I wonder if his third-grade education really allows him the intellectual fortitude to fully grasp the extent of his illness and its ramifications.

Can his friends and one local sibling rally around him and provide the care he will need at home with the support of hospice? Would his aging father come from Puerto Rico and care for him? Can I direct and manage this team of people to keep him comfortable, put out fires, and deal with the continuing challenge of symptoms, pain, and suffering that is inevitable when and if he does indeed go home? Will we need to decide that going home is out of the question and a nursing home is the only option?

These questions swirl in my mind tonight as I ready myself for recovery and sleep. This particular soul's journey is intertwined with mine, and I'll be seeing it through to the end. I only hope the end---and the process of arriving there---does not become unbearable for him and for those who witness his journey.

Wednesday, March 08, 2006

Poor Prognosis

A telephone call (from a patient previously discussed) reveals some disturbing symptoms: almost no urine output for three days, as well as a completely inactive colostomy for four days. He is supposed to start chemo and radiation, but something seems to be going wrong. The cancer, spreading from the area where the rectum used to be, has erupted, and bladder or bowel involvement---not to mention lymph nodes---is only a breath away.

I drive over to the apartment house, homeless men hanging out in the vacant lot next door, brown paper bags concealing their recent package store purchase. A long line of people wait to order lunch at the McDonald's across the street. The smell of french fries wafts through the cold air.

Luckily, the elevator--which smells of Pine Sol--- has been fixed so I don't have to run up five long flights of stairs. He's laying on his side in the bed, sounds of traffic coming through the windows which are slightly open despite the chilly temperatures outside. His face is ashen, and he grimaces and then smiles wanly.

"Does it hurt?" I ask. "Not really." The number of morphine tablets in the bottles confirms that not much has been taken since Friday. Is he in denial, scared of the medication, or is there really not much pain yet? "Yet" is the operative word here. Yet. Promises of suffering to come.

Fever? No. Blood pressure and pulse? Not bad? Coloring? Ashen. Bowel sounds? Yes, but high-pitched. Tenderness? Yes, especially the lower right abdominal quadrant. Ileocecal valve, perhaps? But what about the lack of urinary output? Infection? Stricture? Cancer in the bladder? Yikes. I call 911.

The paramedics seem nonplussed. They've seen it all and this patient doesn't seem so bad. Sure, he can't lay down on his back since the huge gaping wound where his rectum used to be is quite uncomfortable---a wound that will never heal. I tell them he may look OK to someone who doesn't know him well, but he has to go to the ER, no questions. I write a long list of medications and a brief history: HIV, recent active TB treated for one year, diabetes, asthma and COPD, recurring rectal cancer with rectum removed thirteen months ago, patient well-adjusted to the colostomy, very reliable with taking meds.

We ride down in the elevator, my patient walking since the elevator is so small the stretcher would never fit. He's most comfortable on his feet anyway. I tuck him into the ambulance and promise to follow up later, returning to my car, calling the ER to talk to the Charge Nurse in advance of the ambulance's arrival, then call my office and ask them to fax a demographic sheet and med list to the ER.

A big sigh.

Turns out it's not really a bowel obstruction. The tumor in the rectal area has grown and is pressing against the urethra, restricting the bladder's ability to empty. The cancer will eventually break through the bladder wall and then all hell will break loose. The lack of bowel movement was most likely due to the pressure of the full bladder against the bowel. The tenderness in the right lower quadrant was stool stuck in the colon with nowhere to go.

How long do we have? Six months? We haven't even been able to start chemo or radiation yet, not that that's a panacea. It may buy us a few months, that's all. Cure? Impossible. Palliation? If we're lucky. Death by the end of 2006? Very likely.

And miles to go before we sleep.

Monday, March 06, 2006

Misplaced Aggression

Another window of our office was broken this morning when we arrived. Actually, the on-call nurse received a call from the alarm company late last night with the information that a window had been smashed and the (very loud) alarm activated. Since moving into this office five months ago, we've had at least four similar incidents.

On the other side of the health center building is a Latino-run grocery store which serves the community surrounding the clinic. Actually, the medical director of the health center fought hard to have this little store remain here for the sake of the neighborhood and its residents. It's run by people who are of the community and provides access to staple groceries without having to get on a bus, very important for many of the local elderly residents as well as mothers with young children. Filled to overflowing with affordable Spanish bread, avocados, plantains and many of the things this population likes to eat, the store is a frequent stop for dozens of schoolchildren and housewives alike. The windows of the store are smashed almost weekly and there is almost never a window or door not in the midst of being repaired. I can't imagine how much money the proprietor spends on glass repair each year. How long can he tolerate it?

The clinic has served this neighborhood for more than twenty years---ten of them in the current building---and the culturally appropriate care administered there is a lifeline for thousands. Last year, when landscaping was done to spruce up the grounds, the bushes were dug up and stolen over the following weekend. One day, the VCR and TV from the waiting room vanished in broad daylight. Surprisingly, the windows of the actual clinic have not been broken in ages. Thanks for small victories.

Misplaced aggression surrounds us, and there are myriad reasons for its existence. In our neighborhood, the assumption is that disaffected youth, bored and angry, lash out indiscriminately and leave graffiti, broken windows, and other damage in their wake. This is not the place where I choose to pontificate about the reasons for such behavior and the social ills that exacerbate those conditions. It's widely accepted that lack of resources, a feeling of disenfranchisement, and lack of opportunity---whether seen as perceived or actual---all contribute to such situations. Vast tomes have been written about what to do about it. I'll leave it to the social theorists to explore these issues with their expertise and insight.

My place here is simply to acknowledge that our office is regularly targeted, and while it's rather disheartening, it's an accepted risk factor which is part and parcel of our chosen situation. We all could choose to work in the lilly-white suburbs, but the call to work in this community is strong. Being a city with a very high violent crime rate, while I have not felt overtly threatened when making home visits, I do occasionally wear my stethoscope around my neck to identify myself as a healthcare worker. Perhaps this would lead some observers to think that I carry drugs in my bag, but I've never been directly challenged or hassled, only silently stared down with less-than-friendly glances.

We all have occupational hazards. My intrinsic hazards are not directly threatening to my physical health---like carbon monoxide in a mine, for instance---and I acknowledge that smashed windows are not something about which to become overly upset. It's simply a symptom of wider societal ills, and our chosen place is to work amongst the community, ameliorating at least some of the physical and psychic infirmities that debilitate our patients, smashed windows be damned.

As Bugs Bunny once said so eloquently, "It's a living".

Saturday, March 04, 2006

Cultivating Depth: The Engines of Compassion

My new friend Ian at ImactED Nurse writes about depth and verticality in nursing. What does this mean, exactly? Ian explains it best:

"I think there are two aspects to Emergency Department work. The first is a horizontal one. It includes all the activities and interactions we perform on autopilot. The mundane day to day work that we skim along not really thinking about. It usually is rushed and stressed and shallow.

"The second aspect is a vertical one. It often opens up in those special moments when you have some deep interaction with a patient. Perhaps it is when you are ‘in the zone’ during an emergency. It is vivid and spacious and rewarding.


"However, the stress and high workload that now flavors a typical shift in the ED makes it difficult to slow down and to sink into any verticality. I usually begin each shift feeling fresh and relaxed… but somewhere around 14 seconds into a busy shift everything goes horizontal. I feel flummoxed, and my mind is speeding 3 tasks ahead of my hands.

"It is important that this vertical dimension should be recognized and cultivated, as it provides a nourishment, satisfaction and integrity in our work. "Integrity" comes from the Latin root, integer, meaning "entire or whole". This wholeness serves us not by changing the work itself but by changing the way we experience our work."

While I had never hit the nail on the head, so to speak, Ian has verbalized and concretized this notion of what makes our patient interactions more than just mechanical. What is it that takes a potentially mundane interaction and transforms it into a meeting of minds and hearts, where a depth of connection and intimacy is generated and felt by all participants? What engine of compassion springs into action and lifts the provider and patient into that sacred place?

Communicating in one's native tongue, there are subtleties of language and sentence structure which can elucidate one's conversational intention. When I feel that my Spanish-language skills are failing to communicate the depth of feeling and connection that I'm experiencing in the moment, I assume that the sincerity of my effort, the tone of my voice, my open body language and eye contact all contribute to the overall energy of the encounter and fill in the gaps where my words fall short. Explaining physiological processes and symptoms is one thing, but sharing emotional depth and insight commands far greater skill than my linguistic knowledge can often afford me. It is here that intention trumps skill.

Ian also acknowledges mindfulness as an intrinsic factor to cultivating the "vertical" asepct of nursing, moving beyond the mundane to an expansive sense of connection and meaning. Listening--real listening---can also move a clinical interaction into new realms of connection and acceptance of the Other as a divine sentient being. And isn't acceptance and connection what it's all about in the end, anyway?

Sadly, amidst the tumult and mind-numbing experience of nursing and medical school, little attention is paid to patient interaction and communication skills. Even less attention---if any---is afforded the subject of compassion as it relates to the nurse's approach to the patient and his or her problems. As a part-time nursing professor soon to abandon my brief teaching career due to over-work and significantly decreased leisure time, I can see that the horizontal aspect of nursing dominates nursing education, and the cultivation of verticality is left as a personal endeavor pursued by the relative few. In the tumult of profit-driven healthcare and minute measurements of "productivity", the thoughtfully deep interaction is neither honored nor quantifiable. It is a qualitative connection which, if utilized correctly, can tranform a therapeutic relationship into a symbiotic human bond which exponentially increases both satisfaction and positive outcome for all parties. Since these skills are not necessarily taught, it is a personal and singular decision when one chooses to cultivate, hone, and activate such depths of compassion and heart during patient encounters.

As for the Engines of Compassion, I believe these are latent engines which exist within each of us, intrinsic aspects of human consciousness available to all who care to listen. It is when we choose to develop these muscles of compassion--for it is through repeated use that we strengthen such organs---that the real work of being human begins and our ability to deeply effect others is at its most profound.


Thursday, March 02, 2006

Multi-Tasking Mayhem

During an 8-hour flurry of non-stop activity today, I wondered what possible toll multi-tasking on a grand scale might have on one's brain. I was quite conscious throughout the day that, no matter how determinedly I approached a specific task in the course of the day, that task was inevitably interrupted and superceded by the next challenge rearing its head. No sooner had I responded to a telephone call from one patient and begun to document that conversation, the next situation arose and demanded my attention. At several of the most challenging moments, my mind reeled in temporary repose---not the repose of calm, more like an over-taxed computer going on "stand-by". Did I reboot my hard drive? Did I run out of memory? No, just a fleeting loss of power. Luckily, I have a built-in surge protector.

The day was punctuated by several minutes sitting quietly with a depressed patient, his eyes watering as he told me his family history. It was a typical story in many ways: death, abandonment, depression, poverty. Ah, the human stories. Just having met this gentleman last week, we are still becoming acquainted. I sat facing him with open gaze and body language. The rest just flowed.....

The majority of the day was jockeying telephone calls, negotiating medication refills and urgent calls, and managing the reams of papers and charts littering my desk, all screaming for my attention. It is those very human moments amidst the chaos which may sometimes allow one a moment to center and be fully present, the multiple tasks on the desk momentarily in suspended animation. The crush of unending tasks, although a seemingly necessary evil of such work, only serve to further burden the compassionate heart and mind. It is one's ability to remain fully human under such circumstances that saves one from a certain type of spiritual death at work.