Sunday, August 31, 2008
While I was visiting my second patient, we sat at his kitchen table as I prefilled his medication box for the upcoming four days. We chatted about the weather, his apartment, his general health, and his family. It was a normal visit with a paranoid schizophrenic, and our rapport was comfortable despite the fact that we had never met before.
Halfway through filling his medication box, my cell phone rang. Unfortunately, I had not set my phone on silent and the sound of the phone's ringing filled the air. Now, I am not one to download a new ring tone from the Internet every week like some people seem to do. In fact, when I received this phone earlier this year, the pre-programmed ring tones were so annoying, I searched for something in earnest that I could embrace as my own. Eschewing all mechanical sounds, I opted at the time for the sound of a galloping horse (paying $1.99 for the privilege of its use) and have had that ring tone ever since.
Enter the psychiatric home visit. Perhaps you see what's coming.....
As my phone rang a third time, my patient----who suffers from paranoid schizophrenia with auditory and visual hallucinations---began looking around the room in order to identify the origin of the sounds of the galloping horse. Seeing that he was not answering my most recent question due to this new distraction, I realized that he was likely experiencing my phone ringing as a psychological phenomenon, his eyes darting around the room nervously as the ringing continued. Struggling to extract the phone from my pocket, I hurriedly opened it, turned it to silent, and apologized profusely for the rude interruption. He looked at me perplexed.
"That sound of the horses you just heard----I heard it too," I said. "It's actually my phone. I downloaded that ring-tone. I'm so sorry if it frightened or confused you."
He looked at me blankly for a moment and then a look of realization came across his face. "It was your phone? I was hearing your phone?"
"Yeah, it was just my phone. Sorry, again." I smiled weakly.
"OK, OK, no problem." He looked dazed.
"Well, let's finish this med box and I can get out of your hair this morning." I returned to the task at hand with a silent sigh of relief.
He seemed to come around back to his originally clear-eyed self after several minutes, and as I left, I apologized again and closed the door behind me, all the while chastising myself for my negligence in not silencing my phone when my home visits began an hour earlier.
So, nurses and other concerned citizens, movies and cafes are not the only places where the ubiquity of ringing cell phones can alter the trajectory of one's day (and annoy others in the process). I learned an interesting lesson that day, one that can potentially be translated to other professions and life situations. Cell phones may be useful for staying connected with one's friends and family, but they are often intrusive, ill-timed, and in this case, downright disturbing. A cautionary tale, indeed.
Thursday, August 28, 2008
I am once again squeezed into a cold plastic and metal cylinder, my nose just an inch or two from the smooth inner contours of the tube. I have removed my wedding ring, glasses and earring (I am pierced only on the left, dear Readers), and I'm wearing my own t-shirt (white, v-neck, 100% cotton, purchased at JC Penney's, if you must know) and a ridiculous pair of flimsy blue cotton pants with a fly that won't close given to me by the radiology tech. Having forgotten to wear socks (it's hot out and I came to the hospital in sandals and shorts), the aforementioned and very kind tech wrapped my feet in a white blanket and covered me with a second blanket in an effort to make me feel at home and cared for, not to forget the (completely ineffectual) orange earplugs placed in my tender ears. The efforts at creating some semblance of comfort were appreciated, and I did feel cared for and at home (well, as at-home one can feel in a cold room filled with computers, blinking lights, a gigantic magnetic donut, and switches and gauges of unknown purpose).
I have had several MRIs over the last few years, my first one immortalized in this post ("An MRI for I & I") back in 2006. At that time, apprehensive but curious about the machine and the experience of the tube (and the notorious noisiness of the test), I experienced what I can only call a medicotechnological (yes, it's really a word) epiphany.
A lifelong fan of electronic music, some of which many people might actually characterize as noise, I found the cacophony, drones, and loud beeping of the MRI magnets both intellectually and musically interesting. At that time, I had been listening to music by the band Matmos, their most famous recordings being music made from electronically recorded samples of noises made during medical procedures such as liposuction. So, to make a long story short, the almost onomatopoeic "noise" of the MRI's inner workings was actually like an electronic symphony as I lay in my 21st century sarcophagus, and , truth be told, this time my reaction and experience were no different. In fact, I eventually relaxed so much inside that friendly plastic cylinder, I actually had a nap during the last sequence. I guess I figured I had to lay absolutely still anyway, so why not catch a few winks on my insurance company's nickel? (Thanks to my insurance company's largesse and my doctor's clinical astuteness, I take Mirapex for fairly severe Restless Legs Syndrome and Periodic Limb Movement Disorder. Good thing, or trying to lay in that tube totally still may have looked---and felt---quite different.)
Based on my experience with both MRIs and electronic music, I would propose that, rather than medicating anxious and claustrophobic patients with Ativan or Valium prior to MRIs and other such noisome procedures, patients should be enrolled in a four-week course of "Electronic Music Appreciation". Following a thorough introduction to Brian Eno, Robert Fripp, John Cage, Philip Glass, Matmos, Kraftwerk, and The Boards of Canada, the would-be unhappy, claustrophobic and traumatized MRI recipient would be transformed into an appreciative and well-adjusted patient eager for a repeat MRI at a moment's notice. (Come to think of it, perhaps insurance companies would balk at actually making the MRI experience more enjoyable. After all, if patients aren't rattled by the noise and close quarters, they might demand that their doctors order more MRIs and CT Scans so that they can once again have the ultimate sonic and musical experience.
Anyway, if you're planning to have an MRI yourself, please feel free to email this writer for a primer on electronic music, and for a friendly reminder to always wear socks (preferably clean) when going to the hospital. If, for some reason, you're afraid that electronic music appreciation is simply not for you and there is virtually no way on Earth that you would actually enjoy (or even revel!) in the knocking and whirring of the giant magnets rotating around you in a plastic donut at 100 miles per hour, simply go your doctor, tell him you're claustrophobic, and say "Make mine a Valium, doc".
Tuesday, August 26, 2008
Monday, August 25, 2008
A San Diego fertility clinic that refused to provide artificial insemination to a lesbian woman based on her sexual orientation has tasted defeat at the hands of the California Supreme Court.
Guadalupe Benitez was denied insemination by two doctors at the North Coast Women's Care in Vista, California, after being told by the doctors in question that their Christian values would not allow them to artificially inseminate a lesbian. In later testimony, the doctors stated that they simply would not perform the procedure for any woman who was unmarried, despite her sexual orientation.
While a state appeals court did indeed rule in favor of the doctors' rights to refuse to treat based on sexual orientation or marital status, the California Supreme Court overturned that ruling by citing The Unruh Civil Rights Act, which prohibits discrimination by any business---including medical facilities---based on gender, sexual orientation, religion, and many other protected categories.
An editorial in the Los Angeles Times praises the decision, while also citing disturbing statistics that many states actually have legislation in place protecting doctors' rights to deny patients treatments or services that they find "religiously objectionable". The LA Times also shares the results of recent studies revealing that 14% of doctors polled stated that they would deny certain treatments to certain individuals while refusing to provide viable alternatives or referrals for such care, if confronted with a situation at odds with their religious convictions.
In reaction to the ruling, the Los Angeles Times editorial states:
"The tradition of religious freedom in the United States is one of the founding ideals of this country. But as our framers envisioned it, religious freedom referred to a right to practice one's own religion free of interference from others. It did not refer to religiously based interference with the rights of others, who may have their own and different religious traditions. Even in the relatively religiously homogeneous era of the framers, such interference was not acceptable. It is even less so in 21st century America. With religious heterogeneity growing, the devotional demands of one group may be increasingly at odds with those of others.
"Yet too often, our deference to religion in contemporary American society has allowed us to subordinate all other values. It has allowed us to routinely accept religiously motivated behaviors that we otherwise would have no reluctance to sanction and that, indeed, would be impermissible with any other justification.
"So it's time to say 'enough.' In the United States, we all are free to practice our religion as we see fit, as long as we do not interfere with the well-being of others by imposing our religious views on them. If physicians or other healthcare providers who have religious objections to legal medical treatments will not at a minimum inform their patients about those treatments and refer them to others who will deliver them, they should act in a way that is consistent with their convictions and the well-being of their patients and find other professions. "Freedom of religion is a cherished value in American society. So is the right to be free of religious domination by others."
I could not agree more with the statements by the LA Times editorial team. While I wholeheartedly respect the beliefs and values that guide any individuals' life, doctors and medical personnel hold an oath to first "do no harm", and I believe that "harm" includes refusal to provide care to another human being based upon discrimination, potentially leaving that individual without recourse or alternative affordable options for such care. Even though in vitro fertilization is indeed an elective procedure which does not have life-and-death implications per se, it is the principal of the matter that lies at this heart of this case.
As the LA Times stated in yet another editorial: "A clothing store may choose not to sell polo shirts. But once it sells polo shirts, it cannot withhold them from customers based on their race, religion, sexual orientation and so forth." Taking into consideration that medicine is also a business, following the letter of the law, a business must abide by anti-discrimination laws when serving consumers of any class, group, or minority, regardless of the feelings or values of the business owner or operator.
Now, doctors can still indeed refuse to perform abortions, in vitro fertilizations, or any other manner of procedure that does not fall within the bounds of their personal moral compass (just as the aforementioned clothing store can choose to not sell polo shirts). However, following non-discrimination laws, if they choose to offer a procedure to their patients, then it must be offered equally to all, not solely to select groups who meet the doctors' criteria for moral righteousness.
While some may argue that the refusing doctors did, after all, refer the plaintiff to another provider who eventually performed the procedure (and apparently incurred the costs that the patient would have paid in higher fees to the other provider), it is easy to imagine other less fortunate patients being sent on a wild goose chase, seeking medical care that was consistently denied to them based on some aspect of their beliefs or lifestyle.
The California Supreme Court obviously felt that this case had much broader implications beyond fertility and in vitro insemination. With this decision, the court decided to send a clear message that protection against discrimination based on sexual orientation and marital status is just as crucial as protection against discrimination based upon race or gender. If this case had been decided differently, perhaps we would then begin to see further erosions of the rights of gays and lesbians in all manner of areas of legal, medical and commercial transactions.
I am certain that this issue is not going away, and that proposals and ballot initiatives striving to ban gay marriage entirely will surely gain moral steam in reaction to this decision. However, the California Supreme Court has taken a stand, and I personally feel that their choice to rule in the plaintiff's favor, however controversial, will stand the test of time and further appeal.
Sunday, August 24, 2008
In a report published by Open Secrets, a non-partisan guide to how money influences politics in the United States, the amount of money spent by lobbyists representing the health care industry is truly astounding.
According to a review of lobbyists' spending in Washington, D.C. during 2007, the health care industry itself spent $445 million dollars (nearly half a billion dollars) on lobbying contributions, 15.9% of all lobbying money spent during that calendar year.
Breaking down the numbers further, 51% of all healthcare lobbying was spent by---you guessed it---Big Pharma and medical products companies, for a total of $227 million.
Next, health insurance companies spent $138 million, and you can rest assured that they were not asking Congress to support universal healthcare legislation.
Following on the heels of health insurers, hospitals and nursing homes spent a paltry $91 million dollars, and interestingly enough, the American Medical Association itself spent $22.1 million on lobbying.
With all of this money flying around the halls of Congress in the form of dinners, golf games, campaign contributions, cruises, vacations, summer home rentals and the like, it's no wonder meaningful healthcare reform never seems to manifest itself. On average, $832,000 is spent on each member of the Senate and the House, money that is obviously paid to influence votes and potentially supercede the public interest.
As a nurse who sees the effects of a cumbersome and expensive healthcare system here on the ground, it is entirely unclear to me how so much money can legally be spent on buying power while the powerless struggle to make ends meet and care for their families.
When a senior citizen has to decide between food and prescriptions, something is wrong.
When a person becomes disabled but is forced to lose his home in order to pay his medical bills before his disability is approved, something is amiss.
When millions of children are still uninsured in this country, we are misguided.
When 45 million Americans lack health insurance, we are missing the point.
And when half a billion dollars can be frivolously spent on nothing but the purchasing of political power, we have lost our minds and our way.
Saturday, August 23, 2008
Thursday, August 21, 2008
The Hispanic population of the United States is growing exponentially, and the Pew Hispanic Center chronicles and tracks the collective successes and challenges of this burgeoning American demographic.
According to the Pew Center, the Hispanic population of the United States---currently the largest minority group in the country---will triple between 2005 and 2050, with non-Hispanic whites poised to themselves become a minority by 2050, certainly the largest projected demographic shift of the 21st century.
Taking these statistics into consideration, it is disturbing to learn that a recent Pew Hispanic Center study reveals that 1 out of 4 Hispanic Americans does not have a regular healthcare provider. Additionally, a similar number of Hispanic respondents reports receiving no medical attention or information from any member of the healthcare system in the previous year.
The Pew study, carried out in partnership with the Robert Wood Johnson Foundation, reveals that "the groups least likely to have a usual health care provider are men, the young, the less educated and those with no health insurance." The study results also clearly show that Hispanics who are less assimilated into American society---including those who are foreign-born, recent immigrants, and/or those who speak only Spanish---are less likely than their more assimilated counterparts to report having a regular medical provider.
Interestingly, when pressed for reasons why they lack regular healthcare providers, 41% of respondents simply said they lacked a provider because they are rarely sick. And a majority of Hispanic study subjects---83%, in fact---report obtaining the majority of their health information from television. Additionally, 79% states that they are acting on the information obtained from television and other media sources, changing diet and exercise practices solely based on reports and advertisements.
In terms of those Hispanics who have indeed received medical care in the last year, 77% reported their care as "good" or "excellent". However, 25% of those respondents who received health care over the last five years reports receiving poor treatment within the mainstream American health care system. The report continues by stating, "those who believe that the quality of their medical care was poor attribute it to their financial limitations (31%), their race or ethnicity (29%) or, the way they speak English or their accent (23%)".
Some other surprising findings also were revealed in the study results:
--45% of Hispanics without a regular health care provider actually have health insurance
--Half of the respondents without a regular provider have at least a high school education
--Many Hispanics without a health care provider were born here in the United States
--60% state that they received health care advice from family and friends in the last year
--A "slight majority" of those without a usual provider are "English-dominant or bilingual"
Following the release of the study, the headlines trumpeted the news: Many Hispanics Shut Out of U.S. Health Care System, Latinos Turn to TV for Health Advice, 25% of Hispanics Don't Visit Doctor Regularly, among other declarative statements meant to inform the public of the results of the study in simplistic and less-than-nuanced terms.
But what do these findings mean? What do we actually take away from the study results? Is there something in American society---or American health care, in particular---that has to change? With Hispanics carrying a disproportionately significant burden of diabetes and other chronic illnesses when compared to other segments of the population, it is in our best interest as a nation to address these disparities in a meaningful way. Whether we want to believe it or not, a lack of preventive health care on the part of such an enormous demographic will eventually have a widespread economic impact on society as a whole, with everyone eventually paying the price in one form or another.
Considering the climate towards immigrants since 9/11/01, it is this writer's fear that xenophobic Americans who rely on a "they should all speak English" anthem will use the results of this and other studies to defend their position that immigrants must conform, assimilate, and master the English language as a means to fuller participation and representation within the larger society. While all immigrants do indeed assimilate to some extent as they enter a new culture, the fact that Hispanics will be a majority of the population of the United States in less than 40 years underscores the notion that a broader view of this situation must be taken in order to fully embrace the coming demographic shift and its implications for health and health care in America. Websites like Optimos Medicos and other sites geared towards the Hispanic community indeed do their part to help bridge these gaps and cultural/linguistic divides.
In my work as a nurse care manager for inner city Latinos over the course of the last decade, I have witnessed first-hand how culturally appropriate health care can be delivered to under-served populations despite barriers of language, education, and socioeconomics. However, the Pew/Robert Wood Johnson data suggests that there is more than simple socioeconomic factors which deter Hispanics from seeking regular preventive health care. When extrapolated, the data demonstrates that a large percentage of Hispanics---whether educated, English-speaking, foreign-born or not---have a relative tendency to eschew regular preventive health care, relying instead on the media, a perceived lack of acute or chronic illness, family and friends, and intermittent urgent care, in order to meet their health care needs.
It is my contention that the Pew findings necessitate a great deal of soul-searching for public health officials, Hispanic and Latino consumer groups and community leaders, government officials, as well as a broad spectrum of insurers, regulatory bodies, medical providers, health care systems, and others. I would venture a guess that Hispanic community leaders, clergy, popular entertainers, and other recognized figures of authority and cultural significance would be most likely to succeed vis-a-vis a public relations campaign urging Hispanics to obtain and utilize regular preventive health care. Additionally, it would behoove state and federal governments to invest in such a campaign with the knowledge that pennies invested in preventive health care now will save many dollars in the care of the chronically ill in the future.
So, what might a public relations campaign look like in order to reach Hispanics? Obviously, since such a large percentage of Hispanics report obtaining (and utilizing) health care information from television and radio, I would suggest a massive bilingual ad campaign targeting all segments of the Hispanic community. Highly esteemed popular entertainers and other prominent figures could be recruited as spokespeople for the campaign, providing a familiar and respected face for the project.
Above and beyond spokespeople and television ads, I picture a nationwide body of trained outreach workers (volunteer and otherwise), fanning out within their communities, educating their fellow community members about the value of preventive health care. These workers would be armed with literature, contact information for culturally sensitive medical providers accepting new patients, and other resources about what types of preventive health care are most highly recommended. Currently existing outreach infrastructures could be utilized in order to reach deeper into neighborhoods and social circles without duplicating efforts, dove-tailing with other outreach teams already actively involved in their communities.
Just as the gay community pulled together in the early days of the AIDS epidemic, educating one another about prevention and treatment options, stemming the tide of the epidemic, the Hispanic community could, with the appropriate resources, reach out within its own population in an attempt to bring more individuals into the fold. Coupled with a sustained, savvy and intelligent media campaign, major inroads could be made vis-a-vis enrolling Hispanics into primary care.
Considering the breadth of the issue and the potential challenges it presents, many arguments could be made that such a campaign is doomed to failure, and that the economic resources do not exist for such a massive outreach effort. And with no mandate for universal health care in this country, uninsured Hispanics would still be left in the dark. However, if one considers the potential impact of of an aging population of Hispanic citizens in 2050, burdening the economy and the society with undetected and untreated chronic illness, there is no question in my mind that millions of dollars in health care costs would be saved over the course of the next generation.
Preventive health care is an investment, and if we are truly a multicultural and tolerant society of immigrants and the descendants of immigrants, we have an opportunity to show our true colors, embracing the health of our Hispanic brothers and sisters as our own, investing in their---and our---collective future.
The Pew/Robert Wood Johnson study demonstrates what may indeed be a crisis of faith on the part of Hispanic Americans vis-a-vis the mainstream health care system in this country. However, the Chinese symbol for "crisis" is also the symbol for "opportunity", and this is one opportunity that we as a society should not miss.
Wednesday, August 20, 2008
Friday, August 15, 2008
Thursday, August 14, 2008
I drove about twenty minutes to reach this patient's home, winding through lovely country roads, past old farm houses and pastures. Reaching his neighborhood of middle- and upper middle-class homes, I was struck by how out of the ordinary this situation seemed to me. For the last eight years, almost all of my home visits have been to poor, inner-city neighborhoods, trailer parks, or lower income neighborhoods with modest single family homes. Not since I was a visiting nurse back in the late 90's had I actually visited a patient whose home reminded me, perhaps, of my own parents' home back in the day.
The home smelled of garlic, tomato sauce and stewing summer squash from a large garden in the back yard. An above-ground pool bubbled outside, and we sat on a relatively new overstuffed sofa, our feet on plush carpet, a rambunctious four-month-old yellow lab entering and exiting the room every few minutes. My patient's wife buzzed around the kitchen and dining room, setting the table and trying to usher the dog away from my bag of bandages and supplies.
My patient and I talked about his work with a medium-sized company, his recent surgery, and how his wound had been healing. Like sitting with a benign uncle in a comfortable living room (with the exception that I was actually dressing a surgical wound), we chatted about dogs, our adult children, and a few other random subjects.
At the end of the visit, I put away my supplies and washed my hands, readying to take my leave as dinner was reaching the well-laid table. It was such a familiar scene---familiar in a visceral way, but unfamiliar in terms of the home environments into which I've been accustomed to walking in the course of my nursing career.
I felt no judgment of my patient and his lifestyle. In some ways, it smacked of American middle-class privilege, but I had no idea of knowing from this brief encounter what this man and his family might think about the poor. Perhaps they give money regularly to progressive social causes and volunteer at the local food bank. Maybe one of his children works for a left-wing NGO or humanitarian organization. Maybe they support the Republican National Committee. Who knows?
Before, during and after this visit, the main focus of my awareness was on class, privilege, and the fact that I have so rarely had the opportunity to visit patients in such comfortable and middle-American surroundings.
I'm not sure how I feel about this demographic shift, although I still do visits to rooming houses and low-income buildings in our area. Having mostly eschewed my work in the nearby inner city, I am now evaluating this new manifestation in my professional life and how it effects me on an emotional, spiritual and psychological level.
Choosing currently to work as a visiting nurse in our much less ethnically diverse collegiate area (which in turn is surrounded by middle- and upper-middle class neighborhoods, small towns and semi-rural suburbs), I am acknowledging my certain sense of "compassion fatigue" and burnout that I experienced working with the poorest of the poor in the city for the better part of a decade, and my slow adjustment to a new class paradigm.
For almost ten years, my professional identity (and to some extent my personal identity, as well), was wed to the notion that I worked in service to the poor, advocating and fighting for them to receive the best quality health care that I could coerce and squeeze from the system. Stepping out of that environment---at least temporarily---I'm struck by the stark differences of class and privilege that I witness, and I simply acknowledge to myself that yes, this is assuredly different.
So, patients come and patients go. They are all of one class or another, all born into some situation or another, their class, race and social status beyond their control. I am simply noting the differences, evaluating my response, and cultivating an awareness that allows me to sit with each person, look them in the eye, and meet them face to face, hopefully without judgment or preconceptions.
Nursing brings one into contact with the diversity of humanity. This diversity of humanity is a wonder to behold, and in one's relationship to that wonder, one can also find a many puzzles to ponder.
Wednesday, August 13, 2008
Tuesday, August 12, 2008
Held at the inner-city senior center where my wife is the director, the party was held outdoors under a threat of rain that was controlled through Caribbean rituals used to ward off foul weather. Despite low-lying clouds almost bursting with moisture, no rain came. The women preparing the festivities had taken time for ritual, drawing crosses of salt on the ground and filling a cup with water, covering the cup with a plate, and then turning the cup and plate upside down and setting it on the table with the food. As we spread plastic table-cloths and stacked plates and napkins, one woman looked at me and said with confidence, "It no rain now."
The man of the hour---a dignified and jovial Hispanic man known for his infectious laughter and almost constant smile---was marking his 100th birthday. As the hectic preparations came to a close, he emerged from the center at the end of a long line of family members---not unlike a wedding procession. With straw fedora atop his balding head, his smiling countenance greeted his loving community as we burst into applause and Spanish songs. At that moment, the sun streamed down upon him like a spotlight and the cheers erupted further still.
It was a very happy occasion, and well-wishers filed by his table to shake his hand in hopes of receiving some intangible essence that might confer longevity and robust health. Salsa and merengue streamed from a homemade car that is daily driven around the neighborhood like a roving sound system. At the appropriate time, the music was quieted as blessings and spontaneous old Latino songs were belted out by smiling guests, some dancing together between the tables. Even the stalwart cook, a handsome sixty-year-old who always stations himself at the grill, let the hot dogs and hamburgers cook on their own as he gracefully danced with the ladies who approached him.
As an outsider with an insider's view of this very festive occasion, I was struck how certain ethnic communities work so hard to maintain their culture, their songs, their folkways and practices, even in the midst of America. I felt pleased for my friends and acquaintances, and so very pleased that this elderly gentleman's distant family who could not be present will see hundreds of photographs of the festivities, the miles of land and ocean bridged to some extent by the record made of a momentous event.
As I turn 44 this week, I can only hope that I would be surrounded and celebrated so vibrantly if I were lucky enough to complete my very own century. I was so very happy to be a part of this special day, and feel blessed to have been welcomed to experience such a moving celebration. After one hundred years of love and laughter, may the man we celebrated today be blessed with the knowledge of being so dearly and unconditionally loved.
Friday, August 08, 2008
Pain has been a constant companion for several years now, and a number of medical and alternative modalities have offered little respite. Depression, an older and more intimate acquaintance, is sometimes in the background and sometimes in the foreground, but my ability to live with its presence---and function well in the world in spite of it---is somewhat more practiced than my relationship with pain. Still, I go about my days and enjoy a modicum of success, love, prosperity and contentment in my life.
After coming home from work this evening on the heels of a day in the inner city, the last thing I wanted to do was to go back out, but I had a commitment to take an elderly disabled friend out to dinner, and there was no way I would renege on that promise. This woman has been our friend for many years, ever since my wife was her Personal Care Attendant (PCA) and advocate in the mid-1990s. Now, in order for her to stay out of a nursing home, she again needed official advocates to oversee her care, and my wife and I have stepped up to the plate as volunteer advocates (or "surrogates" as we're officially called), charged with managing her team of PCAs and putting out the brush fires that are part and parcel of running the team and household.
With Mary not feeling well, I went to town on my own and our dear friend was waiting outside in her electric wheelchair, and she squealed with delight as I kissed her hello. Although I was nervous about being out with her on my own for the first time, we communicated well and I was able to discern her needs despite her very limited powers of speech from the effects of cerebral palsy.
During a simple dinner on the patio of a local restaurant, I used a small mouse puppet to entertain her, having the mouse "eat" some cornbread, crumbs stuck to its furry face as my friend laughed uproariously. Forgetting about my pain, my depression, and my own (tediously boring) problems, I was able to detach from my "story" and simply be present with this wonderful, warm-hearted woman.
Walking through town, we stopped into a local cafe, listened to live music, and I bought my friend her favorite dessert---chocolate mousse---to savor over the weekend at a time of her choosing.
It was apparent that having company, a chance to go out on the town, and the stimulation of laughter, food, and music was very uplifting for my friend, and as I drove towards home, I realized that being of service and giving of myself for two hours was, after all, uplifting for me as well.
Escaping from my own self-indulging rut, I had a respite, a reprieve, and time to focus on someone else. And that person---disabled, without family, and living on a very fixed income---is a happy, content and lovely person who brings joy easily to others with a simple smile and a kind, compassionate presence.
So, in the midst of pain and depression, it is still possible to serve, to be served, to heal, and to be healed. May wonders never cease.
Thursday, August 07, 2008
At the invitation of NurseConnect, I will occasionally be posting to their site about issues salient to the nursing profession and the healthcare industry. Thanks for taking the time to read my post, which, for understandable contractual and copyright reasons, will not be available on any other website.
Wednesday, August 06, 2008
Tuesday, August 05, 2008
The predictions are in. The number of Americans over age 65 will double by the year 2050, and this demographic shift is occurring on almost every continent.
Personally, although I am not a member of the Baby Boom generation that accounts for the majority of this projected statistical growth, I will turn 65 in 2029, putting me squarely in the midst of the burgeoning data pool.
So what does this mean? What does such a huge demographic population shift portend? How are we to prepare for such a tilt of the generational scales?
First, it seems apparent that governmental bodies must prepare as massive numbers of older adults begin to retire and collect government benefits (to which they are justifiably entitled). Medicare and Social Security here in the U.S. must be protected from bankruptcy, and there seems to be little actually being done about it from this lay-person's perspective. How will these programs survive the onslaught without further government intervention?
And as these scores of hopeful retirees begin to navigate their "post-career" world, many of them are already discovering that making ends meet at a time of astronomical increases in the cost of living is not merely a challenge, it is a matter of basic survival.
How many seniors are now competing with teenagers for entry-level jobs at checkout counters and convenience stores? How many elderly citizens are having to make painful and difficult choices between food, prescriptions, and home heating oil? Which seniors are choosing to sell their beloved family homes for which they have worked so hard for so long, moving to low-income housing to reduce costs and make ends meet? These are hard times, and for many newly-retired seniors, the times may get even harder.
Back in the day, a nest egg was amassed over time with a combination of diligent saving and the promise of life-long company pensions (now mostly a relic of the past). After World War II, many former soldiers went to college for free, pursued vocational training, or bought homes under the GI Bill, securing economic keys to a bright future promised by a grateful post-war government.
Today, families face a different set of economic circumstances. The cost of college has risen exponentially, and many families go into considerable debt to educate their children (or for middle-aged parents to pursue new careers in the face of a changing workforce). Relatively speaking, housing costs have also risen astronomically, with middle-class families struggling to manage mortgage payments, a substantial number sadly ending up in foreclosure. Add to this the cost of healthcare (with rising insurance premiums and out-of-pocket expenses), the price of oil, and the concurrent rise in food prices, and a recipe for economic suffering is securely in place.
So, within this cultural milieu, the newly retired, the elderly and the very old balance on a financial and societal precipice. With working families less able to assist elderly family members economically, and with elders living longer due to advances in medicine and medical technology, how will we as a society care for our elders who cannot care for themselves? Will we warehouse those who cannot afford tony apartments in bourgeois assisted living facilities, spiriting them away to less-than-adequate nursing homes for the economically challenged? Will the working class elderly have to fend for themselves as the Social Security pie is divided beyond recognition, unable to keep pace with the rising cost of living?
As a society, we truly need to think deeply about how we will make adjustments to care for, house, feed, and provide for a growing geriatric population that is projected to continue to expand for the next forty years. It is apparent to this writer that controlling the rising costs of healthcare, food, and energy are three keys to the potential success of any attempted economic rescue of our---or any other---society. I am no economist or demographer, but I can see the writing on the wall, and elders who are unable to pay for medicine, healthcare, heat, and food are elders who are at great risk on many levels of their lives.
With families around the world struggling to make ends meet, and the economic barometer anything but reassuring, it isn't only the elderly who are in need of succor. Still, like children, the elderly are a vulnerable population requiring stewardship and thoughtful oversight by both the powers that be and the citizenry at large. And how we care for our elders and our children is a good indication of the overall humanity of our collective moral compass.
Saturday, August 02, 2008
Friday, August 01, 2008
I am shadowing a psychiatric visiting nurse, learning the ropes so that I can help out with mental health visiting nurse visits on a per diem basis. She knows this patient well and seems able to easily understand his mumbling answers to her questions.
The next apartment we visit is relatively neat and clean. The patient is engaging and much more talkative. He likes to write, has a Master's degree, and uses a Smith-Corona typewriter that sits on the kitchen table. His psychosis has prevented him from working or otherwise engaging in a more active life for a number of years. I peak at the page still held in the typewriter's grip, and the first line says: "I like that the anagram for the word 'listen' is 'silent'."
I had never considered the relationship between those two words before, and sat contemplating the multiple levels of meaning inherent in that relationship as the nurse continued her assessment.
Listening does indeed involve a commitment to momentary silence, and any listening done without allowance for silence is not necessarily true listening. Sure, I can question a patient and pretend I listen to her answer as I filter her response through my own preconceived notions of what she might say (or what I want her to say). I can also listen to her response, already wondering how I can use it in my next blog post, essentially robbing her of my complete attention as I consider how to turn this visit into a story.
With patients---whether they be psychiatric patients or hospice patients---listening is a gift that we can give, and if we are able to listen---truly listen---we are wrapping that gift in the shiny material of our own humanity.
In my work as a hospice nurse and visiting nurse, I want to bring the gift of truly listening to the care I provide. I can check blood pressures, dress wounds, take temperatures and irrigate catheters, but when all is said and done, open-hearted listening without a personal agenda can be more telling than the most comprehensive physical exam.
"Silent" is the anagram of "listen" for a reason.