Today I was at a lunch for nurses and nurse practitioners whose work involves patients with HIV and AIDS. We meet monthly at a local restaurant (the tab picked up by a pharmaceutical rep) and discuss issues of import to us and our practices. The drug rep is quite respectful, never pushes her products, and brings in speakers who are in no way beholden to gear their talks towards our host's medications currently on the market. The food's great, the company is excellent, and we can all look forward to our meeting every month. The grilled salmon settled in my stomach very well, and I could just feel those fish oils decreasing my LDLs as I sat and listened to our local AIDS guru expound on the newest meds in the pipeline.
What struck me so clearly is how far we've come in the treatment of AIDS, the voluminous knowledge breathtaking in its scope. I can hardly begin to describe for the uninitiated the dizzying array of terminologies and diagnostic tools currently at play. It is simply astounding, as is the very international effort to further the research and share the results of that research worldwide.
When hanging out with providers or scientists who work in this field, there is a vast nomenclature which can leave the neophyte stymied and confused. Terms like "treatment-naive", "wild-type virus", "genotype and virtual phenotype" are bandied about in a way that demonstrates how they are second nature to those in the field. It is an intimidating ocean of knowledge in which I splash tentatively by the shore, sometimes up to my knees, and only several times have ventured too far and felt as if I was drowning. Not being a prescriber, I am free of the responsibility of prescribing such toxic medications, although my job entails monitoring my patients for side effects and helping them work through the potential misery while staying on course.
Towards the end of the talk I asked our presenter how these terms come into popular use among the AIDS community. For instance, how did the term "viral fitness
" come into being? Who introduced it? Who coined it? Is there some governing body that announces the adoption of such terminology? Our presenter acknowledged that, no, there is not a governing body that hands down decisions on which terms will "stick" and which will be jettisoned to the nomenclature dustbin. Generally speaking, influential researchers will use a term for the first time in a published paper, and that term will be picked up by others, make its way into the literature, be adopted into PowerPoint presentations, be repeated in articles and professional talks, and eventually fall into general use by providers on the front lines. I wondered aloud if it would be interesting to write an article or a book on the nomenclature of AIDS, from the early days of ARC
(AIDS-Related Complex) and PWA
, to some of the current terms like "deep salvage
" and "lipodystrophy". I wondered if I could (or would) write such a treatise.
After the lunch was digested and all of the talk somewhat assimilated, day to day life on the aforementioned front lines continued. One of my patients who has been living with AIDS for years, his virus currently suppressed for more than five years now, stopped by for a chat. Despite his excellent adherence to meds and our relative success in his treatment, he is wasting, losing weight alarmingly fast with no discernible cause. He smiled broadly, handing me a letter that came in the mail today, telling him that he was approved for 120 cans of Ensure per month for 12 months. My letters and applications had succeeded, and he would be assured of an extra 1000 calories a day for a year, not to forget the other nutrition therein. He beamed at me, and we even noticed that he'd gained a few pounds this month. Small victories mean alot.
On the other hand, a long-time patient of mine who just can't seem to beat back his virus was once again in the hospital. His daughter called me on Friday, saying that her father had a high fever, difficulty breathing, and very marked irritability and confusion. Due to his history of toxoplasmosis
and seizures, I urged a call to 911 and facilitated his care at the ER by phone. Sent home hours later without conclusive evidence of anything being wrong, he was back in the ER on Saturday with a higher fever and even more severe mental status changes. He's like Job, it seems, beset by complications and symptoms at every turn, poor guy. I was so sad to hear that he had taken a turn for the worse.
On my way home tonight, I stopped at the hospital. His wife was placing a cool cloth on his forehead as I entered the room, and I held her as she cried on my shoulder. She' s HIV positive as well, but his health is always on the edge while hers holds steady. I've bent over backwards for this man, and I'll continue to do so, no matter how exasperating he can be.
He looked at me as his eyes brimmed with tears. I put my hand on his forehead and felt its heat. His misery was palpable, although when I asked him how he felt, he said in Spanish, "I feel a little bit OK". I reassured him that everything possible is being done for him and that I'd be back tomorrow.
Ducking into the nurses' station, I conferred with one of the residents following his case. She listened intently to my take on his last few years of treatment, and we bantered professionally about his case, those familiar words bubbling up into our conversation: opportunistic infections, toxoplasmosis, immunosuppression, fever of unknown origin, antiretrovirals. Our conversation centered on the clinical aspects of the case, but I also tried to infuse it with some of my understanding of the patient himself. We can all sometimes get so lost in the words, and we must sometimes make sure to remember to re-inject the patient back into the conversation.
While the description of the lunch juxtaposed with the face-to-face patient contact may seem somehow incongruous, I guess the point that I'm trying to make is that there is a balance between the clinical separateness---all of the words and concepts that make up our understanding of an illness---and the patients themselves, their stories, their humanity, their flaws and strengths. Where there are reams of papers detailing resistance profiles, mutations and the genotypic profiles of various viral strains, we can never escape the reality on the ground, the human side of the equation about which there is scant research and relatively little attention. Those lunches and talks feed our minds and sharpen our skills, improving the clinical aspects of our care, the intellectual work which is part and parcel of the struggle. But we must always remember that all of these words and names and labels mean something about an actual person, a being of flesh and blood who cries, laughs, sleeps, and dreams.
These are the places where the science and art of medicine and nursing intersect, and where the art, informed by the science, brings it all back to a simple hand on a forehead and a hug and a tear. The balance is easy to see, harder to attain, but crucial for us to truly deliver our best care each day. There is the nomenclature of science and the nomenclature of love and compassion, and we must speak them both equally fluently.