Thursday, May 31, 2007

Talk About a Wake-Up Call

Coming home after a twelve hour day, I settled in to check email and do some blogging. I was surprised (and somewhat stung) by the following comment left on yesterday's post:

Kiki said...

I WAS ROUTED HERE THROUGH YOUR WIFES BLOG AT ZAADZ.COM. I HAVE NOTICED THAT YOU BOTH LIKE TO BLOG ABOUT ALL YOUR "ACTS OF GOODNESS" AND HUMANITARIAN. UNFORTUNATELY I COULDN'T HELP BUT NOTICE A SORT OF "STUCK UP" ATTITUDE YOU BOTH HAVE. LIKE YOU NEED A CONSTANT PAT ON THE BACK FROM ANYONE WHO WILL LISTEN. IN A SENSE I FEEL VERY BADLY FOR THE TWO. YOUR POINT OF VIEWS ARE MADE TO BE THE ONLY POINT OF VIEW AND IF YOU DISAGREE WITH OTHERS THAT MAKES THEM WRONG??? UM, HELLO. WE ARE ALL ENTITLED TO WHAT WE CALL "OUR OPINION". HOW IRONIC THAT YOU BOTH HAVE THIS MADE UP AILMENT (MCS). AREN'T A LOT OF ILLNESSES HEREDITARY? DID YOU MARRY YOUR SISTER. FOR YOU TO WANT TO PROTEST AGAINST PERFUME/COLOGNE. AND TO STEREOTYPE PUERTO RICANS AS PEOPLE WHO WEAR TOO MUCH PERFUME. DID YOU EVER THINK THAT MAYBE YOUR COWORKERS DON'T LIKE THE WAY YOU SMELL OR LOOK OR WORK - YET THEY DO NOT CAMPAIGN TO STOP YOU FROM YOUR FREEDOMS? YOU REALLY NEED TO STOP LOOKING AT THE WORLD FROM ONLY YOUR WORLD. STOP THINKING YOU ARE DOING SO MUCH FOR OTHER PEOPLE WHEN REALLY IT SEEMS AS THOUGH ALL YOU NEED IS A HIGH FIVE.

I felt it was only necessary to comment in response, and I will share it here, as well:

Keith, RN said...

Wow, Kiki. That is certainly blunt and to the point, and generally unkind in tone. I always like to try for "radical honesty with compassion" but you seem to have skimped on the compassion. And I guess using all capital letters is supposed to be akin to shouting from the rooftops.

We all see the world through our own lens, and that does have its negative and positive sides, of course. While your words have a sting, I'll try to take them in and see if there are aspects that ring true and can be integrated into my thinking and acting in the world.

As for a "made up ailment", it is very real for us, and no, I did not marry my sister. In fact, we both probably have MCS because we were both poisoned by radon and other environmental irritants when we lived as newlyweds in a very old house.

Overall, your comment's lack of kindness and compassion is what most strikes me. While it will certainly engender a great deal of self analysis, it also makes me wonder what type of person you are, what good you do in the world, and how you impact others' lives for the better. I will look for you on Zaadz.com and try to ascertain the answers to my questions.

In the end, I have to thank you for this gift, even though it is delivered with emotional daggers.

I wish you peace and kindness, even when you cannot wish the same on others.

Tuesday, May 29, 2007

XDR-TB: Time to Listen

Just today, the Centers for Disease Control of the United States issued its first government-mandated quarantine of an individual since the early 1960's. According to reports and a CDC press conference this afternoon, a gentleman traveling on two separate trans-Atlantic flights was already infected with Extensively Drug Resistant Tuberculosis (aka: XDR-TB) when he boarded those two planes. Although the relative risk of infection is being characterized as low, the officials at the CDC are taking no chances and have quarantined the individual until further testing and treatment can be accomplished.

I have mixed feelings about today's events. On the one hand, I understand the need for quarantine, and when international travel is involved, the rapid spread of HIV in the early 1980's taught us how air travel can move a dangerous organism around the globe in a matter of hours. On the other hand, issues of individual liberties and freedoms are raised when the government begins issuing orders for quarantine, and it is not difficult to imagine scenarios like those portrayed in Albert Camus' novel The Plague. While Camus' story is more about existential angst, personal redemption, and the growth of Fascism in Europe than it is about infectious disease, it paints a picture of the loss of individual freedom under the guise of government control "for the public good". In these days of Guantanamo Bay and Abu Ghraib, it is not beyond imagination to picture a situation in which a fearful and power-hungry government imprisons political dissidents who are "diagnosed" with a dangerous new infectious organism. Camus' novel is a chilling read and could not be more timely.

In terms of more contemporary scientific literature, Laurie Garret wrote of the "newly emerging diseases in a world out of balance" in her equally chilling (and very non-fiction) tome The Coming Plague in the late 1990s. Ms. Garrett underscored the fact that rapidly spreading, drug-resistant diseases would begin to emerge and traverse the planet with greater frequency and virulence unless something was done to stem the tide. Consider her book a public health version of Al Gore's An Inconvenient Truth.

Many questions were raised today, and very few clear answers seem forthcoming. This one individual has been quarantined, and many passengers and crew from the affected flights will be tested and treated. But I believe today was a wake-up call for the public health community (not to mention the rest of us), and the ramifications of today's events will be enormous and perhaps vastly unforeseen.

Sunday, May 27, 2007

Of Language and Culture

I work with a number of Puerto Rican professionals and para-professionals who are mostly second-generation Americans, their parents having migrated to New York City in the middle of the last century (thus the self-chosen moniker "Newyoricans".

Getting to know the Puerto Rican community, there are many things I find curious and interesting. One of the things I find most curious is the fact that many Puerto Ricans who are second-generation Americans choose to speak only English at home, raising their children as monolingual English speakers. As one of my coworkers recently pointed out, she and her husband---both professional "Newyoricans" whose parents did indeed come to New York in the 1950's---use Spanish as a "secret language" at home, allowing them to talk about the children and other issues without being understood. While I appreciate the notion of parents having conversational privacy from their children, there is a cultural and economic advantage of growing up bilingual, and my colleague's children have missed a wonderful opportunity to enter the workforce as fully bilingual and bicultural adults.

Having grown up in a very assimilated third-generation Jewish European-American home, I have asked my parents about the languages spoken in their homes when they were children In New York City. Apparently, their grandparents spoke mostly Yiddish (and some Russian, apparently), also using said languages as "secret codes" to keep the children in the dark. By the time my parents' generation came of age, the only language used (other than for various popular Yiddish euphemisms and sayings) was English.

My friends in Europe speak many languages based upon the pluralistic nature of modern European society. Their children begin learning English in kindergarten (at least in Holland) and will graduate high school with no less than three languages under their belts, linguistically prepared for the modern economy.

For Latinos here in the United States in the 21st century, being bilingual and bicultural is an economic advantage not to be underestimated. With Latinos poised to be the majority of the country's population (over Whites, Asians, and African-Americans) by 2050, having facility in both English and Spanish is an incredible boost for any young professional's resume. How sad that my colleague's children have to learn Spanish "from scratch" in high school, struggling with the rudiments of the language which they could have had easily instilled in them from birth. Perhaps a genetic disposition for Spanish may be genetically possible, but there is no substitute for growing up immersed in more than one language at home.

But for every rule there is an exception, and I'm sure there are many Latino households where both English and Spanish flow like intermingling streams. The children who are lucky enough to be raised in an environment where fluency in multiple languages is the norm are sure to have a great economic and social advantage as this century matures. I hope that their non-bilingual peers eventually have an opportunity to even the score.

Friday, May 25, 2007

Finally Friday

For those of us who work a traditional five-day week, Friday brings the welcome denouement of our five days of travail. Add to that a Monday holiday (like the upcoming Memorial Day here in the U.S.), and a very lovely triad of days off beckons like a siren to a wayward ship.

My personal vessel feels rather happily tired tonight. I started the day with a very useful and growthful hour of good ol' psychotherapy. Next was a consult with my new gastroenterologist (see this post for the run-down of my own healthcare cast of characters). Five hours of work felt amazingly like eight, and then the sleepy drive home delivered me for a delicious hour's nap in the hammock. Sixteen laps in the pool at the nearby health club roused me from my torpor, and now as bedtime nears, my body is readying for sleep. How lucky am I?

There are many blessings to count in the preceding paragraphs. First, I have gainful employment with weekends off. Second, I have the absolute blessing of health insurance, allowing me the relative luxury of psychotherapy and gastroenterology for the asking. I have a reliable car to get me to and from these activities, and a home where a comfy hammock awaits my weary body. Toss in the health club and a quiet place to sleep, and there you have a person who has a better standard of living than probably 90% of the world's population (at least). That is not a notion to take lightly.

So, I am happy that it's Friday and that there are three blissfully long days to fill with as little or as much activity as I like. If I was disabled, poor, infirm, or living in a war zone, all of the above undertakings would seem like something one could only dream about.

Speaking of dreams, I ran into a doctor yesterday at the clinic who only comes to see patients for surgical consults every two weeks. "David!" I said. "How are you?" He shook my hand and replied, "So, are you living the dream?" I thought for a second, caught off guard, and said, "Yeah. I guess I am."

The dream is what we make it, apparently. No one put me here. No one forced my hand. To paraphrase (and contradict) David Byrne, I would say, "This is my beautiful house. This is my beautiful wife." And then, if I were smart, I'd get down on my knees and thank my lucky stars for my very own embarrassment of riches.

Thursday, May 24, 2007

Thursday's Thirst

As the week comes to a close, today's theme emerged as one of thirst, both literal and figurative. My mouth seemed unable to reach a state of equanimity and fluid balance today, remaining just slightly dry and uncomfortable throughout the day. Multiple bottles of spring water, a few cups of decaf coffee (admittedly a diuretic), and a few sessions of toothbrushing later, and the thirst just barely abated by the end of my long workday which was sandwiched between two different per diem gigs of short duration (two home visits as a visiting nurse before 9:00 this morning, and three hours as a clinic nurse this evening after 5).
Speaking of thirst, my experience of patients today also revealed an unrequited longing. For what, you may ask? A longing for self-empowerment among my patients, for the taking of personal responsibility, and for patients to fully appreciate the quality of care which we provide. There exists for most of us an unquenchable thirst for patients to seize their own care by the horns, take charge of their lives, and rise above the feelings of disenfranchisement and disempowerment which relegate many of them to the ranks of the Walking Wounded.
We sometimes long for more patients who will honor their commitments to appointments, show up for surgery, and come in for bloodwork in a timely manner. We wish that a larger number of our patients could arrange their own transportation and advocate for themselves in the face of a bureaucratic system which seems to promise their disempowerment.
Of course, any of us could at any time choose to work in a suburban clinic, serving white middle-class baby-boomers in need of throat cultures, prostate exams and Prozac. Instead, we choose to slog away here in the inner city, fighting the good fight, improving the healthcare of "vulnerable populations", giving of ourselves and hoping to prevent negative outcomes for patients with multiple co-morbidities and the added insult of poverty.
Communities of color suffer disproportionately from a multitude of diseases when compared to their white counterparts. They also are documented as being more likely to receive substandard medical care, less aggressive treatment of chronic and acute disease, substandard pain management, and are underrepresented in clinical studies and pharmaceutical trials. A burden unknown by mainstream American citizens? You bet.
In the end, what do we really thirst for? We thirst for justice, for parity, for equanimity, for equalized distribution of resources and healthcare dollars, and the recognition that our thirst may very well be the fuel for future change and revolution.
Drink up.

Wednesday, May 23, 2007

Worthy Wednesday

Continuing along the same vein of daily titular alliteration, today was a Wednesday worthy of the moniker "Hump Day". Wednesday, that day which symbolizes "the day of maximum hope that maybe, you might make it out of this week alive" (Urban Dictionary). The German word for Wednesday---Mittwoch---says it all: "mid-week"; and that notion of "middle" can mean only one thing---that the end is only around the corner.

So today was one of those mid-week days, not overly busy, but busy enough that the sweetness of the coming three-day weekend can be tasted on the tongue like a long anticipated and justifiable dessert.

This week has seen its share of difficulty and strife: a patient reporting that he is the victim of domestic violence; a patient's granddaughter in state custody due to an unstable mother and substandard home environment; illnesses and losses of varying levels of seriousness and magnitude.

As Thursday and Friday rise on the horizon, I realize that relief and rest are around the corner. Does everyone get the rest they deserve? Sadly, no. Are some lives simply rife with trauma, rarely seeing a glimpse of relief? Unfortunately. But for the working person, that golden glow of a weekend is just what the nurse ordered for rejuvenation of the mind and soul. Without that recovery time, the refractory period following the stressors of the week, this particular nurse would simply be yet another member of the "walking wounded", and my ability to serve anyone's greater good would be severely compromised. So, nose will be dutifully applied to proverbial grindstone for two more days, and then that nose will rest on the luxurious pillow of the holiday weekend before it resumes its grinding once more.

Tuesday, May 22, 2007

Tenable Tuesday

Since expectations for a "Tumultuous Tuesday" were nullified yesterday, the knowledge that a good day was wholly within the realm of possibility set in motion that potential outcome. And lo and behold, Tuesday dawned and the day unfolded in a moderate and tolerable fashion.

Plagued by a headache all day, the ups and downs of work made little impact on my mood. Running from patient to patient, answering call after call, trolling the clinic for available providers to sign narcotic scripts for needy patients---none of it altered my feelings of equanimity. What sweet relief.

Finding these moments, hours, or days when the self seems to be made of Teflon, when the stressors of the workday seem to slide off without making a mark---these are moments to savor. One must always remember that this is possible, even on the most stultifying and exhausting of days. Without this type of respite, the daily grind will wear one down until the nose on the grindstone is nothing but a shadow of its original shape.

I will continue to look for such moments, strive to create them, and then store them in my memory like tropical islands which I can visit when the going gets tough. We all need such spaces which allow us mental relief and rest, otherwise we are simply automatons on the road to a miserable retirement, or an early death, both potential futures which I unequivocally reject.

Monday, May 21, 2007

Merciful Monday

More than a year ago, I titled a post "Oh! Merciful Monday!" I decided this evening that the very same title is the most appropriate for today's missive, hence this updated edition with basically the same name.

For reasons both within my ken and without, the week began not with a bang, but rather with a whooosh, onomatopoetically speaking. True, the telephone rang incessantly, the emails came and went, the home visits, office visits and hospital rounds happened as they will, but it all came together without a sense of urgency or harried overwork. (And we even slipped in a 80-minute lunch meeting on HIV at a local restaurant.) Thus the wooosh rather than the bang.

Looking back on that previous post of the same name from December of 2005, one of the striking moments from that memorable day was my trip to the bargain store to purchase an alarm clock for a patient who was under investigation with social services due to her young children constantly missing school, and always due to her inability to wake up early in the morning. Interestingly, children also figured in today's events, or rather one child, at least.

I visited a patient who has a ten-year-old granddaughter with whom I have a sweet and tender connection. Since she has spent a large portion of her childhood living with her grandmother, I have gotten to know her over the years. At six years old, she could hardly read a word of English or Spanish, and I pushed quite vehemently for her to be enrolled in school, occasionally rewarding her with gifts for good educational progress. Due to her mother's drug abuse and other regrettable habits, this lovely young girl is now a ward of the state and in foster care. My patient is fighting for custody and I offered to write a letter of support in that effort, and plan to celebrate with them when she is finally allowed to live with her grandmother. No doubt she may be traumatized by her foster care experience, separated from her siblings, her troubled mother, and her loving grandmother. I felt tears form in my eyes as I heard my patient's recounting of the situation, and I told her that I would do anything in my power to assist her in winning permanent custody.

Despite this small drama, and the busy environment of the office, my head remained clear and the day unfolded gently. Even computer glitches couldn't ruffle my feathers. (It must be the Prozac. Or perhaps the Laughter Yoga?)

Does my cynical side expect a "Tumultuous Tuesday" following a gently merciful Monday? That other shoe may be ready to drop, but why expect it to do so? Tuesday will be what it is, and no amount of cynical worry will mitigate that possibility. Conversely, a positive frame of mind about tomorrow's possibilities could indeed lay the groundwork for yet another day of equanimity and
balance. As far as choices go, it's a pretty clear no-brainer.

Thursday, May 17, 2007

It's Time for Change of Shift (Again)

This one of my regularly irregular posts to invite you, dear Reader, to surf over to the newest version of Change of Shift, that venerable compendium of some of the best nurse-blogging around. Even so, they have been kind enough to include one of my posts for publication. Who could ask for more?

Wednesday, May 16, 2007

Good Enough for Today

"So," I said. "Thanks for coming in to see me. It's been a while."

"I'm happy to see you," he replies. "I'm glad you called."

I check his weight, his vital signs, feel his belly, listen to his lungs, review his last labs.

"You know, I'm worried about my liver. I haven't been to the specialist for a long time."

"Why not?"

"I've been traumatized by the whole idea that the cirrhosis is turning into cancer."

"Wouldn't you feel less afraid and anxious if you had more information and saw the doctor?" I ask.

"No. Sometimes it's better just to not know anything." I think he's serious.

"You mean," I reply, "like what you don't know won't hurt you?"

"Yeah. Like that," he nods.

"Hmmm." I look at him and move my rolling stool closer to his chair. "I always think that information gives you the option of acting or not. Otherwise, you're just blind with fear and anxiety."

"Am I gonna die?" he asks me plaintively. "Can my cirrhosis be cancer now?"

"Well," I choose my words carefully and slowly. "Cirrhosis can lead to cancer if you're not careful. If you're drinking alcohol, it's like pouring gasoline on a fire."

We look at each other silently for thirty seconds or so.

"Tell you what," I say. "I'll call the liver specialist and see if he has an appointment open on a day when I can accompany you. Would it help you feel less anxious if I went with you to the appointment?"

"Are you kidding?" He stands up and offers his hand for me to shake. "That would be so helpful. You can do that?"

"We can do whatever we want," I reply. "I'll call tomorrow and make an appointment for next month before my vacation. Meanwhile, you take good care of yourself and come back and see your primary doctor on June 1st. I'll see you then, OK?"

"Alright," he replies. "That sounds great. I feel much better now."

"I'm so glad. Will you call me if you need me?" I hand him my card.

He accepts the business card and says, "I always lose your card. I'll put it in my wallet now." He tucks it into his leather wallet which he pulls from his back pocket.

"OK. See you on the 1st of June. My office will call and remind you of the appointment. And don't worry."

We shake hands. I pat him on his shoulder as he steps ahead of me and walks towards the exit. We've had similar conversations in the past. He's even put my card in his wallet at least three or four times before. Is this time different? Will he follow through after having been lost to care before? Hard to say. But each time we have contact, we're building trust, constructing a relationship, and moving towards a goal of empowerment and therapeutic partnership. Maybe he'll no-show on the 1st. Maybe he'll no-show to the gastroenterologist. But he showed up today. And for now, that's good enough for me.

Tuesday, May 15, 2007

Weather Report

Sunny disposition with hints of cloudy preoccupation throughout the day. No precipitation anticipated. Energy levels buoyed by increased sunlight, yet confinement to indoor spaces does decrease potential positive effects of solar gain. Emotional temperature is relatively stable, with no stress-induced overheating expected, however some atmospheric turbulence is inevitable. Hydration and feeding adequate to task of metabolic equilibrium. Waste disposal adequate and functional. Nocturnal outlook is good, with seven to eight hours of calm weather each night, followed by partial clearing around 6:30am.

Extended forecast: more of the same, only better.

Sunday, May 13, 2007

Happy Mother's Day

Wishing mothers everywhere a day of peace, love, and appreciation.

Amidst all the celebration, I also must take a moment to acknowledge the mothers around the world who have lost children (whether recently or in the distant past)---to war, to famine, to accidents, to violence, to addiction, to disease, to suicide. Whatever the reason, those mothers who are bereft also deserve our love and best wishes today and every day. May the flowers, hearts, candy, and cheer of this Mother's Day energetically feed the souls of those mothers who are less than happy today, unfulfilled, or living in loneliness and isolation. To all of the homeless mothers, refugee mothers, suffering mothers, the burdened and the infirm, deepest wishes for peace and healing. And to all of those whose mothers have already left this world, similar wishes, now and always.

Thursday, May 10, 2007

Schwartz Center Rounds

A new concept made its way into my personal and professional orbit today and I wanted to share it here. This concept is something called "Schwartz Center Rounds", which, according to the official website, is "a multidisciplinary forum where caregivers discuss difficult emotional and social issues that arise in caring for patients." The organization is doing some very interesting and thought-provoking work, and we are considering applying for a grant to bring Schwartz Center Rounds into our workplace, where the stress of our work takes its toll daily.

The Schwartz Center website explains further: "Over 26,000 clinicians across the country participate in these interactive discussions and share their experiences, thoughts and feelings on different topics. Schwartz Center Rounds take place at over 110 sites in 26 states."

Developed at Massachusetts General Hospital, the center appears to focus its energies on communication skills, end-of-life care, cultural competency, and spirituality. Aside from the Schwartz Center Rounds model, other programs include specialized training for medical, nursing, and allied health students, a speaker series, The Compassionate Caregiver Awards, and a Clinical Pastoral Education Program for Health Professionals.

Simply the notion that an organization exists with the sole aim of "strengthening the patient-caregiver relationship" buoys my spirit. That we, as a group of professionals, may be able to apply and receive grant money to strengthen our connections with patients and support ourselves in our work is truly a beacon of hope. In a team discussion, we decided that, whether we receive the grant or not, we have to make it our mission to bring this level of healing and self-awareness into our midst. The work that we do---caring for the sickest, poorest, and most disenfranchised inner-city communities---can truly exact a heavy price on clinicians and administrative staff alike, on both the physical and emotional levels. Despite the stress of our endeavor to provide such cutting-edge care, our attrition rate is extremely low, a testament to the closeness and camaraderie that we share as a team. Many of us frequently remark how this group of people works so well under incredible duress with such grace. Still, no amount of camaraderie can counteract the stress-related illnesses that can develop when deeper needs go unmet. I am a walking example, and my healing journey is still ongoing.

Gone are the old-fashioned days of the private-practice physician who tends to the needs of a small geographic area from birth to death, delivering babies and pronouncing the deaths of elders at home. Healthcare has become a behemoth of specialization, splintered care, multiple caregivers, complex treatments, and a financial climate which often flies in the face of the essence of caregiving. Managed care often ties clinicians' hands, and caring for patients is made all the more difficult as providers jump through flaming hoops of bureaucracy to obtain the optimal treatment for deserving and ailing patients. The explosion of obesity, addiction, mental illness, and multiple comorbidities further stresses the system and the caregivers, and dangerous communicable diseases have only increased patients' fears and providers' need for increasingly specialized knowledge. It's a complex medical world in the 21st century, and fears of litigation only serve to make providing care that much more stressful.

Given the current healthcare climate, the complexity of patients with multiple illnesses, and the demands on all of us working in the field, there have to be valves through which the pressure is released. Addiction, alcoholism, workaholism, and burnout certainly do release pressure, but the subsequent damage done by these practices is all too real. Schwartz Center Rounds and similar models of self-reflection and development may be just what the doctor ordered, but it's a medicine that will only work if we take it.

Wednesday, May 09, 2007

Just One Victory

"I'm just calling to let you know that everything is going really well," she says over the phone.

"That's wonderful," I respond, smiling into the receiver. "You've been doing OK with the meds, the treatment, and all the bloodwork?"

"Yeah, I'm so encouraged. The doctor says that I'm doing great, and I can tell he's telling the truth. I don't have that pressure in my liver anymore, and all the side effects have gone away."

"Is there anything you need right now?" I ask.

"No. I just wanted to let you know I'm fine, and I'll see you next week."

"Wow," I said. "I'm so proud of you. Have a good week and I'll see you next Wednesday, OK?"

"OK. Bye, and thanks for everything." She hangs up.

I sit at my desk, stunned. Those types of calls are few and far between but the afterglow will last for hours, if not days. Just one victory can carry one a long way through the maelstrom, and I count myself lucky today.

Tuesday, May 08, 2007

Communities of Color and Medical Research

Yet another aspect of racial disparity within the medical field has recently come to the fore. The U.S. Department of Health and Human Services Office of Minority Health has launched several initiatives, in partnership with the Baylor College of Medicine, to address the relative lack of access to medical research and clinical trials experienced by communities of color and ethnic minorities. For more information on the EDICT (Eliminating Disparities in Clinical Trials) Study, please visit this site, which is a partnership between Baylor College of Medicine and The Intercultural Cancer Council.

The preponderance of participants in clinical trials for new medications and treatments are white, and this uneven racial distribution of participants in clinical trials can skew research data by failing to reflect the specific effects of new treatments on people of color. One would imagine, for instance, that differences in kidney filtration rates (GFR) and metabolism would certainly offer insights into the relative effects of certain substances on people of different races, and recruiting more members of non-white communities is crucial for this process. As several articles point out, many communities and individuals lose access to potentially valuable treatment, and researchers lose by having precious little data from which larger generalizations and assessments can be extrapolated based upon their racially skewed and biased data. In the end, future generations suffer as important racial and ethnic differences vis-a-vis responses to treatment and disease are lost to the fog of ignorance. It is a lose-lose situation for all involved.

NPR's recent story on the initiative and its potential benefits also touched on the fact that, based on historical experience, African-Americans have learned to be mistrustful of scientific research. It is well known that slaves in the South during the Antebellum period were experimented upon, with gynecological procedures, surgeries and sterilizations performed on female slaves without their informed consent. This would be reason enough for widespread distrust.

Most infamously, the Tuskegee Syphilis Study, conducted between 1932 and 1972 in Alabama, denied treatment to poor, mostly illiterate African-American sharecroppers for their syphilitic condition. Horribly, the men were never informed that they were infected with syphilis, and were duped into thinking that they were receiving free treatment while the government researchers simply tracked how the disease ravaged their bodies. Even after penicillin was discovered to be the cure for the disease in 1947, the scientists withheld that information from the "participants" in the interest of watching how the disease would progress untreated until death. The study was stopped in 1972, and the fallout from this most heinous event in American medical and scientific history led to the establishment of Institutional Review Boards (IRBs) for the oversight and design of human biomedical research.

With African-Americans more likely to die of cancer than any other racial or ethnic group (according to a study by the American Cancer Society), establishing trust between people of color and the world of biomedical research is in the African-American community's interest. However, based upon historical racial experience, it is immediately understood why African-Americans might have a (perhaps healthy) distrust of the scientific and medical research communities. Even though open access to experimental treatments for cancers with poor prognoses is often a desperate patient's last hope for cure or palliation, fear of exploitation by researchers is an understandable reservation shared by many medically marginalized communities.

In my view, the studies undertaken by the Department of Health and Human Services and Baylor College Of Medicine are long overdue and sorely needed. One would hope that, with skill, cultural sensitivity, and a careful examination of past errors, misdeeds, and lapses of judgment, this "research divide" can be bridged for the benefit of all.

Monday, May 07, 2007

Dental Care and Medicaid's Blind Spots

If a poor African-American child dies from the complications of an untreated dental abscess, will anyone care? Apparently many people do, and a hearing on Capitol Hill may only be the beginning. From NPR to cable news, the story has traveled the wires.

Deamonte Driver, a 12-year-old from Maryland, died recently from complications of a dental infection for which his mother could not find treatment. The boy's family is insured by Medicaid, and I do not believe the firestorm surrounding his death will be extinguished any time soon. While managed-care bureaucrats argue that plenty of dentists could have treated Deamonte, the health department of Prince George's County lists only 50 dentists willing to treat the approximately 50,000 children with Medicaid in that county alone.

Speaking of the seven-month battle to secure dental care for Deamonte's brother, Laurie Norris, a lawyer from the Baltimore-area Public Justice Center was quoted as saying, "It took the combined efforts of one mother, one lawyer, one help-line supervisor and three health-care case management professionals for a single Medicaid-insured child."

It was pointed out during the Capitol Hill hearings that Maryland has the lowest reimbursement rates in the nation for dental restoration procedures. We all acknowledge that dentists and other providers must be able to meet their overhead, pay staff, have adequate salaries, and be able to repay significant business- and education-related debt. However, what do we tell these children whose teeth rot in their mouths? And what do we tell mothers like Alyce Driver, who has lost her son before his thirteenth birthday because she could not find timely dental care in one of the wealthiest nations on Earth?

Political will is not easy to muster in this country, especially when it involves increasing benefits for poor communities of color. As the presidential campaign escalates in rhetoric and promises, much lip-service is paid to abstract concepts like "the sanctity of life" and no child being left behind. Deamonte Driver was left behind, and his life was certainly sacred to his mother and family, as it also must be to us all.

So, back to my original question. If an African-American child dies from an untreated dental abscess, does anyone care? Apparently so. Now, what will be done to honor Deamonte's short life and prevent others from suffering a similar fate? This society has some choices to make. Let's pray that the will to make those choices exists, or such stories will only be repeated for years to come.

Sunday, May 06, 2007

To Book or Not to Book---It's Not Really a Question

Our local worker-owned, leftist, GLBT-friendly collective bookstore is advertising for a new collective member/owner, and Mary has been agitating for me to apply. Due to my struggles with chronic pain and a variety of health issues which are certainly exacerbated---if not caused--- by stress (ie: nursing), Mary felt that the 50% reduction in salary would be well worth the decreased stress levels which a change in career would engender. With experience in the book business and communitarian endeavors, my chances of landing the position would be fairly good, especially given the fact that we are members of the wider collective and friendly with all of the owners/workers.

Appreciating Mary's concern for my health, I have demurred, although the idea did pique my interest for a day or two. At this time of my life, with eleven years under my belt as a nurse, I feel that my time in service to others in this way has not yet come to a close. My identity as a nurse----hence the email address of nursekeith@gmail.com----is still quite strong, and as I have written in the past, that identity is still part and parcel of how I move and act in the world.

Among nurses, there is frequent discussion of whether nursing is a "calling", a profession, a vocation, an art, or a science. Dictionary definitions of "calling" label it as a vocation, profession or trade, with some allusions towards an inner "impulse or inclination". With three old-school nurses in my family (one aunt served with General Patton during WW II), there is also a potentially genetic aspect to my predilection for my current profession. Service to others has been my central career path for some time (massage therapist, yoga instructor, personal care attendant, nurses' aide). While selling books----especially in a socially-conscious worker-owned collective that supports local non-profits and authors---would also be a great service, my overall feeling is that it just isn't time for such a drastic change of direction.

As I am pulled in many directions in my life, I recognize the need for continued self-care, self-nurturance, and an eye towards change when change is for the best. Whenever I contemplate new directions and the potential for an alteration in life's course, I remember the words of Michelle Shocked on a bootleg album from years past: "The secret to a long life is knowing when it's time to go."

Saturday, May 05, 2007

The Philosophy of Kindness

His Holiness The Dalai Lama has said: “There is no need for temples; no need for complicated philosophy. Our own brain, our own heart is our temple; my philosophy is kindness.”

What more can I say?

Friday, May 04, 2007

Of Carbon, Vehicles, and Choices---A Rant

Commuting more than forty miles round-trip every day, and doing outreach within my city of employ, I come into close contact with thousands of drivers and vehicles each day. Now that I have a hybrid, I am even more conscious of my "carbon footprint", feeling good about my forty miles per gallon but wishing I could do even more to lessen my impact. A job close to home would be the answer, but it just isn't in the cards for me these days. Some day, I promise myself, I'll have a job I can bicycle to.

Living in a car-centered society, one cannot help but notice trends. Despite the upward trend of gasoline prices, there seems to be no downward trend in the purchasing of SUVs. Enormous vehicles---most of which must get atrocious gas mileage---ply the roads in most any city or town. Few, if any, are actually used for either "sport" or utility". Most seem like oversized and expensive status symbols which, by design, have a deplorable carbon footprint. I have heard that even in Britain, where small cars and environmental awareness are becoming almost de rigeur, SUVs are almost as popular as they are here in the US. A sad commentary on the state of the world, in my humble opinion.

Just the other day, I was in traffic behind a gargantuan SUV which had a nameplate identifying it as an "Armada". Last I checked, an armada was a group of warships. If automobile companies see the necessity to name a vehicle after something so militaristic and threatening, what could possibly be next? The Toyota Destroyer? As it stands, Hummers---those vehicles truly designed for combat---still tear their way across the American landscape, threatening to crush into scrap metal any Volkswagen or Peugeot that gets in their way. Apropos of SUVs and accidents, my wife and I have been witness---and first on the scene---for two accidents involving SUVs. In both instances, the SUVs were moving at high speeds, struck (and demolished) much smaller cars, and then proceeded to roll over multiple times. Luckily, no one died in either accident, but each SUV was filled with children.

Speaking of Armadas and Hummers, what is it, pray tell, against which we are so fearfully arming ourselves? What is this distance which we feel we must put between us and our breathren? Of what are we afraid? Conversely, are we only looking to create fear in others? Is our national soul so weak, our spirits so diminished by life in the 21st century, that these hunks of metal and plastic must serve as our talismen and protectors?

I remember when I was a teenager and my mother would remark how it seemed so sad and strange how young men needed to race around the neighborhood with loud cars and motorcycles, trying to prove something to an audience which most likely existed only in their imaginatons. My pat response to her was that those cars and motorcycles were penis extensions, allowing young men who were feeling basically impotent within the society to make a statement about something. While "penis extension" may be too simplistic---or crass---"ego extension" may be a more fitting moniker for those contemporarily ubiquitous SUVs. Even as the times seem to be a-changin', they really never do.

As for the public health aspect of the car and SUV consumer culture (since I always seem to have to slip health in somewhere), we are all aware that safety has been legislated in some states, and seatbelts do indeed save lives every day. Most recently, the governor of New Jersey suffered major injuries when the SUV in which he was a passenger crashed along the Garden State Parkway. Was he wearing a seatbelt? Of course not. And who was the driver of said SUV careening at a languid 90 mph? A New Jersey state trooper, of course. Go figure. If that governor doesn't become an outspoken proponent of seatbelts and automobile safety, he doesn't deserve the office he was elected to.

Earlier, I mentioned a "carbon footprint". Of course, we all burn fossil fuels each day through our daily activities. When our bananas are shipped from Costa Rica to Miami and then trucked to New York for distribution to our local supermarket, the "carbon trail" of those bananas is considerable. If we drive an SUV to that supermarket, the carbon trail is even greater. When most of us flick a light-switch or turn on the washing machine, coal is most likely the fossil fuel from which that electricity is more or less created.

As for the effects of carbon emissions and climate change on respiratory health, we all know that asthma rates are climbing. Smog, fine particulates, industry, vehicle emissions, the scorching of the rainforests, methane from animals for meat production---the causes are myriad. In the inner cities, communities of color are especially hard hit, with rates of respiratory illness skyrocketing. Where do we turn?

As for solutions, there are many places to turn for information and education. So many aspects of daily life are permutated with choices which directly or indirectly impact individual, cultural, regional, and even global health and safety. From one's choice of vehicle to one's shopping practices, every day offers opportunities for thoughtful decision-making. How many trips to the store can be consolidated into one, or eliminated altogether? How will that SUV's gas mileage effect the health of some child in a distant urban center? How many lights do I really need to leave on in my house today?

As a consumer and as a spectator of consumer culture (with a predilection for public and community health), I make my own choices, hoping that they are thoughtful and responsible. I urge others to do the same, to be guided by conscience, and to remember that, in the larger picture, we are all irrevocably interconnected. As far as arming ourselves in vehicles equipped for battle, how about we let our guard down as a society and connect more on the human level? We can't just live in fear, and we also can't live like there's no tomorrow, because at this rate, there just may not be one.

Thursday, May 03, 2007

Notes from an Infectious Disease Symposium

At a Infectious Disease symposium today, a presenting doctor delivered a comprehensive and entertaining review of antimicrobial/antibiotic therapy. Reminding us of the overuse of antibiotics and the prevalence of antibiotic-resistant strains of previously treatable organisms, he admonished prescribers to refrain from giving into the demands of adults with bronchitis---and parents of febrile children---for antibiotics that have no proven efficacy against viral illnesses.

More often than not, a worried parent will fret over a child with a fever and adamantly demand antibiotics from a rushed doctor or nurse practitioner who, in the interest of efficiency and a waiting room filled with patients not yet seen, will give in and write that prescription, knowing full well that the patient would eventually improve on their own without the meds. However, the parent or patient leaves feeling that the doctor saw how sick he or she was, and is satisfied that something is being done to assuage the symptoms. Sounds like a lose-lose situation to me. The only winner is the bacteria that gains some resistance. All hail to the bug!

Further discussion ensued with a description of the many side effects of antibiotics. This esteemed Infectious Disease expert described how antibiotics are indiscriminate in their destructive rampages through the gut, assassinating not only the bacteria which is their intended target, but also the normal flora (friendly bacteria) of the intestine, thus the resultant antibiotic-induced diarrhea which so often results from these drugs which truly are wonders of 20th century medicine. What worries me (but failed to surprise me) is that this doctor so familiar with antibiotics and the ravages which they wreak on the intestinal flora said nothing about replacing those friendly bacteria through the subsequent ingesting of yogurt or probiotics. While antibiotics destroy bacteria and anything else in their way, probiotics (acidophilus, biphidus, and some friendly yeasts) aid in the rebuilding of the gut's normal and delicate balance. While some scientific evidence supports the notion that probiotics actually rebuild the intestinal flora, other evidence admits only that probiotics allow the gut time and opportunity to recover from the ravages of the antibiotics. Whatever the case, this issue deserves attention when discussing antimicrobial therapy, and the entire thing was simply glossed over. Needless to say, I did little to assist the situation, and failed to ask a question to provoke such a conversation. More fool me.

Next was a description of the new vaccine against Human Papilloma Virus (HPV). Several common strains of HPV have been proven to be direct implicated in causing cervical cancer, thus a new vaccine has been approved for sexually active young women and girls in order to prevent certain types of HPV and the potential for cervical cancer. Being the first vaccine to ostensibly prevent cancer, a major breakthrough in cancer prevention in women has been achieved. While many parents may worry about adding yet another vaccine to the arsenal already injected into their beloved children, potentially avoiding the risk of certain gynecological cancers is an enormous benefit not to be taken lightly. That said, the long-term efficacy of the vaccine has yet to be unequivocally proven, with no firm knowledge of the potential need for a booster later in life, as well as an admitted lack of firm evidence vis-a-vis long-term safety. Still, Gardisil will be added to vaccination schedules for young girls between 9 and 13 years of age, and most parents will most likely choose to vaccinate.

Finally, updates regarding HIV/AIDS and the continued development of new classes of medications to stop HIV replication in its tracks was a highlight of the day. More than thirty years since the identification of HIV and the first diagnoses, the scientific momentum has seen no abatement, with new drugs always in the pipeline. As the virus mutates and finds new ways to evade the drugs, scientists continue to find novel methods for insinuating molecules of medication into the HIV replication process, curtailing the virus' ability to copy itself and commandeer its host's immune system. I am continually amazed.

Even now, as the 21st century gets fully underway, infectious diseases seem to still be a great threat to survival and quality of life around the world. Coupled with the urgent challenge of climate change, major scientific breakthroughs will continue to be needed in order for humans to continue to survive natural threats (HIV, HPV) and human-made threats (climate change) which challenge our longevity as a species, and the life of the planet itself.

Wednesday, May 02, 2007

Universal Hum

I'm sitting at my desk and hear a low drone from the city park outside. It actually seems to be coming from multiple points around the park. I step outside the office to investigate.

Four men with leaf-blowers strapped to their backs stroll around the park, pointing the hoses of their machines towards piles of recalcitrant leaves and dirt, flotsam and jetsam left over from the winter.

Closing my eyes, the leaf-blowers sound like chanting Tibetan monks rather than annoying, fossil-fuel burning machines of convenience. Each time one of the men pulls the trigger on his blower, it strikes up a pronounced hum ---"Huuu---ummmmmmm", followed moments later by yet another----"Huuuuu---uuuuuuuuum", the stress being on the first "syllable", like a monk or meditator chanting "Om". Changing my perspective just ever so slightly, this unsightly and potentially bothersome mechanical sound becomes part and parcel of the universal hum, the underlying drone of the world.

Walking next to a busy highway or tuning into the drone of a plane overhead---it can all be as soothing as an ocean or as bothersome as a mosquito in the ear. Perspective means everything.

Sitting back at my desk, the drone is more faint but still noticeable. I smile as I get back to work, the universal hum outside the window signaling that the world outside goes on, even as I am suspended in the relative enclosure of my desk, tucked into the corner of our busy office.

Phones ring, beepers chime, the fax machine groans, conversations around the room rise and fall. Can I integrate even these sounds as part of the universal drone, the hum of my world? Placing a phone call, I have to put a finger in my ear to hear the person on the other end of the line. Sometimes it's just noise, and other times it's transcendent. When I can't hear myself think, it's noise.

So, a faux haiku, with your indulgence, dear Reader:

Leafblowers in the distance
dust swirls
noisy office din
ear plugs, please.

Tuesday, May 01, 2007

AIDS and the Therapeutic Use of Self

At a recent professional talk on various aspects of HIV and AIDS, the presenter---a doctor who works with infected patients---disclosed early in his presentation that he himself has been infected since the early 1980's. He described how he shares his diagnosis with his patients, using his experience and understanding of the disease, its symptoms, and its treatments to relate empathically to his patients.

During the question-and-answer period, I asked the well-spoken doctor if he indeed discloses his status to every patient, or if he does so on a case-by-case basis. He responded that he generally discloses to every patient, with a few exceptions, and that the effect of such self-disclosure can be profound in terms of patients' ability to be forthright and honest with him about their challenges, doubts, and fears.

I asked him if he had done any writing about this very important experience as a doctor with AIDS, and he replied that it had crossed his mind but had yet to come to fruition. Encouraging him to do so, I reminded him that his very valuable insight into the lives of patients with HIV and AIDS was something no other medical professional could possibly match, and that his perspective would be a gift to patients and providers worldwide. He seemed to hear my suggestion and perhaps those words will take wing in his heart.

At one time or another, most healthcare professionals feel a desire to disclose a personal struggle to patients, often with the goal of helping a patient to see that the provider can personally relate to the patient's challenges. I have myself shared openly with some patients about my struggles with depression (when I am sure that that information will actually be helpful), and much more easily share my diagnoses of hyperlipidemia, reflux disease, and chronic pain. When a patient knows that the professional sitting across from him or her takes that same medication or experiences those same symptoms, the resulting mutual understanding can sometimes bridge a gap which otherwise would remain a yawning chasm of personal disconnection and clinical distance.

The healthcare professional must be circumspect in the practice of self-disclosure, use it with caution, and be absolutely certain that such sharing is being communicated strictly for the benefit of the patient, not for some unrecognized need of the provider for sympathy or credibility.

This doctor, I feel, has performed a service for his patients, demonstrating by his good health, attitude, and successful long-term survival with AIDS, that the term "chronic illness" can now be used as a descriptor for AIDS. As the good doctor stated, after 25 years of infection, he is now an "AIDS Geezer", more likely to die from heart disease than complications of AIDS. As the population of perinatally infected children with AIDS declines precipitously (in the industrialized world, at least), the number of elderly individuals living with the disease will continue to rise, creating a new sub-specialty area of AIDS Gerontology. The fact that infected people are now living for decades is a testament to the fact that scientific research, political will, and citizen activism have truly made strides of astronomical proportions possible.

I learned a lesson while listening to this gentleman speak, and that lesson of the judicious practice of the therapeutic use of self can have a far-reaching and profound effect on the lives of both patients and providers. I will not throw caution to the wind, however I will carefully consider how my carefully chosen disclosure may, at times, be a key to deeper understanding, and perhaps, improved clinical outcomes.