The Yale Journal for Humanities in Medicine

In the Trenches: Lessons Learned from One Month in an HIV Ward

James Hsiao
james_j_hsiao@yahoo.com

Introduction

As a third-year medical student, I spent one month of my internal medicine clerkship in the HIV service of our university hospital.  Unlike something like coronary artery disease or peptic ulcer or even pneumonia with which physicians have had long experience, HIV is unique in its reachable past, dating back only 25 years, but still with an indefinite future owing to the fact that no eradicative therapy is yet in sight.  In being wary of the indelible tracks that HIV has left since its initial eruption in the gay community in the late 1970s, I saw my clerkship as an opportunity to enter the medical field at a certain point within the history of HIV.  Unlike the early years of HIV/AIDS – when diagnoses were made only in advanced stages of the disease, with little recourse other than palliative care – the availability of HAART (highly active antiretroviral therapy) has stretched the survival of HIV patients to upwards of 10 to 12 years.  Patients no longer see a truncated future, rather, they see a present that they hope to protract as long as possible.

Even though progress has undeniably been made in the medical management of HIV/AIDS, each triumph cannot be seen as an absolute victory.  Even in a history spanning only a quarter of a century, the disease has evolved tremendously, first surfacing as the mysterious reappearance of a rare cancer in the gay population, while today finding a ready means of transit in the needles shared by injection drug users in the inner cities.  For patients in the inner cities, whose lives lack the structure and stability that would enable them to comply with a multi-drug regimen, the promises of medical therapy are severely limited by the competing demands in their lives.  Drugs are effective as long as a patient is willing to take them, and for patients not yet ready, the promise of perpetual viral suppression is far beyond reach.

On entering our clerkship years, we are sometimes told that patients can teach us most about a disease.  I found the reverse to be true as well, that a disease can teach us much about a patient.  A short hospital stay can unveil a poignant life narrative that underscores the human within the patient.  In this paper, I will tell the stories of some patients I followed during my rotation, patients who taught me much but moved me even more.

Newly diagnosed

Ms. F. was an 18-year old African-American woman who was “newly diagnosed” with HIV.  She came to the hospital with a loss of function on the left side of her body, underwent a craniotomy for a suspected brain tumor, but was found to have no mass in her brain.  Instead, a biopsy of her brain tissue revealed Toxoplasma gondii, a pathogen that causes active infection in persons with a CD4 count below 100.  A subsequent HIV test returned positive.  The burden of the diagnosis derived not only from the fact that it was “new,” but also because it came at such an early age.  Ms. F. might have many more years of the disease to live with, a greater portion of her life affected by a diagnosis that, in other people, may have fortunately been delayed to allow many more years of blissful ignorance. 

Ms. F. had many visitors each day, but she sternly reminded us never to speak about her condition to anyone, except her mom.  That the right side of her head was entirely shaved – revealing a 10-cm incision traversing the top, its two ends closed by a series of staples – gave her further opportunity to ward off disclosure of her disease.  It gave the impression that Ms. F. had a focal disease whose root cause was confined to the skull, all the while diverting suspicion that her illness could be caused by a virus coursing through her blood, wrecking havoc on organ systems far below. 

“This is a really bad disease I have, isn’t it?” Ms. F. asked me one day. “There are all these drugs I could take, but they could do bad things to me, couldn’t they?”  I explained to her that HIV drugs have certain side effects, but that patients can build tolerance to them, or restructure their lives to minimize the disruption they would otherwise cause. “I’m just not ready to start them,” Ms. F. said. “I need to know more about them before I do that.”  Ms. F. had a skeletal understanding of her disease, at least of its gravity, and the challenges associated with HIV drugs, but that was the only time she ever vocalized her concerns about her new diagnosis. 

Like most other patients in our service, Ms. F.’s main worry was her acute condition, toxoplasma encephalitis.  As she was being treated with a course of antibiotics, I would test her muscle strength each morning, asking her to offer resistance to the force I would apply to her extremities.  Though it was quite clear that she was regaining strength on the left side of her body, her fingers were slower to recover, so we decided to transfer her to an acute rehabilitation center.  Having heard rave reviews of a brand-name rehab facility nearby, Ms. F. was insistent on going there and nowhere else.  Her insurance company, however, was reluctant to cover the costs of the rehab facility, and as it delayed its decision, Ms. F. grew impatient as she outstayed her expected hospital course.  One day, she made it clear, “If I’m not going to be transferred out of here today, I’m just going to get up and leave.  I can’t stand to stay here another day.”  Ms. F. had every right to leave, though we made it clear that by leaving, she’d give up any chance of being placed at a rehab facility.  She refused to bend – either she’d get rehab care at the premier facility, or none at all. 

Even though Ms. F.’s childish behavior could be attributed to her age or her recent HIV diagnosis, there seemed to be another reason why she was so adamant about a seemingly unfounded preference.  With the subject of her acute rehabilitation services, Ms. F. had a clear understanding of her options – the facilities that were available to her, and how they ranked relative to one another.  With her HIV disease, the options weren’t as clear-cut.  Did she need to start on HIV meds?  If so, which ones?  And of particular importance, what effect would they have on her life, especially considering that she was only 18 years old and could have to take the medications for life? 

Faced with such uncertainties, it was easier for Ms. F. to focus her attentions on her acute condition, for which she had been prescribed a first-line antibiotic regimen, and for which there were already signs of a swift and full recovery.  Until now, her doctors had been the main decision-makers for her treatment, but as the emphasis shifted from pharmacological management to physical rehabilitation, Ms. F. found an area in which she could make a decision that would have a bearing on her recovery.  Wanting to adhere to the standards that had thus far ensured her optimal recovery, she wanted to be discharged to the top-notch rehabilitation facility.  If she could go there to follow through with her recovery, she could bring closure to a debilitating episode in her life, a small feat that would alleviate some of the burden of her more chronic, unshakable condition.  She needed to win the battle within a larger war in which there would be, at least for some time to come, no real victory.

Vow

Mr. M. came into our service with an unrelenting cough owing to an acute bout of Pneumocystic carinii pneumonia (PCP), and as he fought the indwelling pathogens for a breath of air, he told us he was finally ready to make a break with the past. “I’m ready to come clean, doc.  I don’t want to be coming back here all the time.  I’m ready to stop using smack.  I’m ready to start my meds and stick with them so I won’t keep coming back here.”  Mr. M.’s vow, which resonated with many others we’d heard before, raised the question of whether his attitude in the hospital was consistent with the larger, more perpetual outlook he held at home, or whether the epiphany he reached in the hospital would have any holding power once he returned home.  More likely than not, neither would be the case, since the hospital is an artificial environment, nowhere close to the natural environment replete with the stresses and mitigating factors that bear on Mr. M’s experience of disease.

Mr. M.’s vow was fated to be short-lived for another reason as well, namely, that his acute condition – the straining for a breath of air – was what made him temporarily re-think his outlook on his disease.  Never again would Mr. M want to feel the pain or suffering that brought him to the emergency room, nor suffer the ensuing days of hospital confinement.  The mental vow that patients make to turn over a new leaf is often precipitated by a bodily sting that transiently shakes them out of the chronic ignorance that they’ve for so long used as defense against their disease.  Inevitably, though, once the symptoms have subsided, and the patient returned to their natural environment, the passionate vow disappears as quickly as the acute condition itself. 

Acceptance

Ms. B., a 52 year-old African-American woman who has had HIV FOR 10 years, had come in with thrombotic thrombocytopenia purpura (TTP), a condition in which platelets aggregate in blood vessels, reducing the total platelet count and predisposing a patient to spontaneous bleeding.  I was the third person to perform a history and physical on Ms. B., after the resident and the intern had taken their turns.  As a medical student, I was the one to ask the most questions and perform the most extensive exam, but Ms. B. gave me the time to be a student. “I understand why all this needs to be done,” Ms. B. told me. “I’ve been through all this before.”  Her experiences earlier that year had prepared her for the iterations that came with being at a teaching hospital – so many people on the health care team, so little time with each.  She was also prepared for the laborious plasmapheresis treatment course that lay ahead, one that we hoped would replenish her platelets. 

I checked in with Ms. B. each morning before our team rounded.  I’d ask questions to make sure she wasn’t having any acute symptoms of TTP, then perform a physical exam.  It wasn’t long before Ms. B. began reporting her symptoms before I even asked.  She’d report even the smallest minutiae, such as streaks of blood in her stool, since she knew they could be manifestations of the spontaneous bleeding we all feared.  Ms. B. never objected to the procedures or the medications we prescribed.  The smile on her face – despite an underlying fatigue, and the additional burden of a urinary tract infection – was such a regular sight that it was upsetting to see her pitted against situations that exceeded her endurance to an already rigorous treatment course.  One day when she was suffering an allergic reaction to the plasma infusion, I arrived at the hematology unit to see her curled up on her side, tightly wrapped in her bed sheet, her entire body shivering, her face tucked away in the pillow.  She turned to us momentarily, her face trembling as it struggled to hold the shape of a smile, and whispered, “I’m just having some chills.”  The next day, she was premedicated with aspirin and Benadryl before the procedure, and when I checked in with her, she looked as if the smile had never left her face.  “No problems this time.  I guess those meds really worked.”    

Ms. B.’s platelet count steadily increased during her first week on plasmaphersis.  That weekend, we withheld the plasmapheresis to see if her platelet count could remain stable without the daily infusions, but it dropped back to the near-zero level she initially came in with.  We then started her on HAART, hoping that by controlling her HIV, we could remove one of the factors that may have precipitated her TTP.  Ms. B. endured the episodes of vomiting and diarrhea that ensued, but we changed her regimen when her fluid loss caused her to become hypotensive.  With her platelet count still slow to rise, we started her on a steroid, a decision made with a modicum of uncertainty because Ms. B was, by nature of her HIV disease, already immunosuppressed.  Still, she never uttered a complaint.  Her unwavering loyalty to her treatment regimen now seemed nothing more than an inert passivity to let any medical therapy work its purported wonders on her, even without evidence of return.  I wanted her to muster a voice, to stand up and clamor about the things that were important to her, and that had been unduly overlooked when deciding on her course of therapy. 

One day, when I came into her room, Ms. B. handed me the phone, saying that her father was on the other line and wanted to know how his daughter was doing.  Ms. B. had a thermometer in her mouth that kept her from speaking clearly, but there was a tone in her voice that indicated a reluctance to answer her father’s questions.  I took the phone and spoke with her father.  “She’s been keeping me in the dark about how she’s doing,” he said to me, “so I have to get the story from someone else.”  I didn’t mind speaking with the father, especially since he knew much about his daughter’s condition, and had clearly been involved in her previous bout with the disease, but what I did mind was being an intermediary between the two. 

From the diligence with which she’d report her symptoms in the morning, I believed that Ms. B. had come to accept her disease.  It seemed that Ms. B. was working with her doctors, taking an active role in managing her disease.  Later, however, as her condition grew recalcitrant and the prognosis worsened, it seemed that she became dependent on her doctors, allowing them greater than their share in the battle, and deferring her own responsibilities to them.  Perhaps she accepted not only her disease, but also its ultimate fate, which may have been why she wasn’t assuming joint responsibility in the battle that, at the heart of it, was her own to fight.

When I first spoke with Ms. B., she told me she remembered me from a hypertension workshop a friend and I had given at her church.  Though I didn’t remember Ms. B. from the thirty-some attendees, I did remember the group as a whole.  Their presence at the workshop stood as testimony to the proactive approach they were taking in managing their health.  It gave me the optimism to think that Ms. B. would take an active role in her hospital care.  In addition to being an avid member of her church and attending health workshops, Ms. B. was also taking classes to obtain her GED.  On walking into her room, I would often see books sprawled across her table, a far more intellectual means of passing the time than the ubiquitous reliance on television.  For someone who was 52 years of age and making a resolute, albeit belated attempt at obtaining the equivalent of a high school diploma, she understood the obstacles that once kept her from doing that.  With ten years having passed since her HIV diagnosis, Ms. B. had come to accept her disease as something she’ll have to live with, and to mitigate the toll that her medical problems might otherwise have, she made the most of her life, attending workshops, satiating her literary cravings, and obtaining a long overdue diploma.  Accepting a disease doesn’t mean that one puts up a strong fight, but rather, that one finds the other things in life that matter.

Entitlement

One morning, during team rounds, we followed our resident into Mr. P.’s room. “Can you tell me if you’re having any problems this morning?” the resident asked.  “Yeah, I haven’t gotten my breakfast,” Mr. P. responded. “That should be coming soon,” the resident replied, “but aside from that, can you tell me if anything is wrong?” “Yeah, I’m hungry and my breakfast hasn’t come.” 

Breakfast has been a recurrent problem for our patients, in that it’s either late or consists of the wrong items.  One of the amenities of the hospital is that patients can order meals from an extensive menu, then wait for them to be served at designated times.  It’s a convenience that spoils a patient.  Even for Ms. B., who never voiced a complaint about her treatment course, breakfast was always an issue.  Being a picky eater, she would only have juice and cereal for breakfast, so when the breakfast tray came with the usual pancakes or eggs and bacon, she saw it as a mistake that warranted complaint.  With any other patient, we would have said that they’d have to compromise their standards when it came to hospital meals, but since Ms. B. had recently lost weight, so we had to indulge her fastidious demands.  She eventually built a collection of juice cans and cereal boxes to the side of her bed, reinforcing to us that those were the only foods she could stomach.

Breakfast can be am arguable issue for our patients because it’s one of the few decisions over which they have full control.  In being handed a menu each morning, patients know that the kitchen staff is at their mercy.  For certain diagnostic procedures, patients have to be restricted from eating foods beginning the night before the procedure.  Patients seem to complain less about that than if they were to have gotten the wrong kind of pancake syrup.  The restricted oral intake was at the discretion of their doctor, but the freedom to choose their pancake syrup is a right to which they are fully entitled, and thus, sufficient grounds for raising hell to the hospital staff.

Pleasure

Ms. G. was 32-year old African-American female who came in with cellulitis of her left leg.  Her arms and legs were covered in track marks, documenting her 12-year history of injection drug use, but after a through search, we managed to find an intact vein in her right forearm for insertion of an intravenous line.  Ms. G. pleaded with us to treat her with oral antibiotics, but we told her that the severity of her condition required us to treat her intravenously.  Ms. G. began whimpering as we unpacked the IV kit, and while one nurse struggled to hold down her flailing arm, another rushed in to pin down the rest of her body.  Her vein, difficult as it was to appreciate with our fingers, was a moving bull’s eye target, and after a few near misses, we drove the needle in, only to elicit a prolonged howl that was heard echoing down the hallway.

While many patients harbor a fear of needlesticks, injection drug users can be particular averse to them.  It all has to do pleasure, or lack thereof.  Injection drug users are accustomed to sticking themselves with needles and deriving an immediate sense of pleasure.  If they were to stick themselves without receiving the accompanying sense of pleasure, the painful sensation may be multiplied exponentially.  The anticipated absence of pleasure is what creates the anxiety and self-prophecy that the medical needlestick will bring enormous pain, and some patients will whine and writhe in whatever way possible to avoid being stuck with a needle that they hadn’t intended for themselves. 

Child

Ms. K. was a 28-year old Caucasian woman who came in because of a persistent fever, which she attributed to a recurrence of endocarditis.  Ms. K., an injection drug user, had shot herself up with heroin to alleviate the pain of the fever, so she also presented in acute heroin withdraw.  We entered her room to find her kicking and screaming, shouting, “bring me my medicine, I NEED MY MEDICINE!”  We put her on Buprenex to treat her withdraw, but it took several days for the symptoms to subside.  Each morning, I would stand outside of her room and not hear a peep, and on making my entrance, she would start moaning about the muscle pains she was suffering.  The intern and I never got a consistent story on where the pain was, and we could never reproduce the pain by palpating her muscles.  One day, when she reported pain in her chest, I asked what it might be due to.  “Oh, I forgot to tell you,” she replied, “the other week, I got in a fight with this large woman, and she threw me on top of a radiator.”

It wasn’t clear what Ms. K.’s motive was for exaggerating her symptoms.  She was going through withdraw, so the aches and pains could have registered more intensely because she had a much lower threshold for withstanding them.  Ms. K. had also reverted back to being a child, which happens to many patients who are hospitalized.  Lying in her bed, she could have the doctors and nurses at her beckon call, either by pressing a button or feigning an outrageous symptom that warranted further attention. 

Tough an initial echocardiogram showed no evidence of vegetation on Ms. K.’s valves, she was diagnosed with endocarditis based on her clinical symptoms.  A blood culture returned positive for Methicillin-resistant Staphylococcus aureus (MRSA), a situation that was further complicated by the fact that she had already failed the first two lines of therapy for MRSA.  We started her on the third-line therapy, leaving her with little or nothing else if that were to fail.

Ms. K. became more amenable as the week carried on.  While she initially refused to be examined during rounds, she eventually grew tolerant of our daily routine.  She survived the torturous experience of withdraw, so she no longer needed us to be as attentive as a baby would need of its mother.  Her hospital stay also neutralized the disposition she initially came in with.  On coming to the hospital, Ms. K. – who later told us that she prostituted herself to support her heron addiction – had brought in the ruthlessness of the outside world.  As with many other patients, though, the anonymity of the hospital gown and the sedentary routine of lying in bed all day dissociated her from her alternate identity, the one that existed outside of the hospital.  As much as Ms. K. used her role as a patient to baby herself to us, we used our roles as caregivers to play mother to her.

Over the next few days, Ms. K. kept spiking fevers, indicating that her blood was still swarming with the infectious agent despite antibiotic treatment.  One morning, on listening to Ms. K.’s heart, I heard a new murmur, prompting us to order another echocardiogram, which showed a 3 cm vegetation on her tricuspid valve.  Because there was now clear evidence of endocarditis, and because Ms. K. kept spiking breakthrough fevers, we had to try an alternate course of therapy.  The third-line therapy had consisted of Nafcillin and Gentamycin, with Gentamycin used at a sub-therapeutic dose to potentiate Nafcillin.  As a fourth-line therapy, or therapy of last resort, we tried the two drugs again, both at therapeutic dose.

It was at this point in Ms. K.’s hospital stay that my rotation came to an end.  When I went in to tell Ms. K. that I was leaving, she asked me what her likelihood of recovery was.  “The doctor told me there was nothing he could do for me,” she said.  I thought about that statement for a moment, then realized that she may have quoted a variant of what the doctor actually said. “There’s nothing else we could do for you,” was probably what the doctor said, making full reference to the fact that her medical team was doing all it could to treat her infection.  Ms. K. may have read the statement in a pessimistic light, but I couldn’t think of any way to introduce a grain of optimism to a situation as bleak as hers.  I told her to stick with her therapy, and hope for the best, as generic as it may have sounded.  Ms. K. looked as if she had hoped for a more encouraging response, but wasn’t surprised by the paucity of what she got instead.

While Ms. K. was making an unspoken plea for things to work out, I couldn’t help but think of how childish she was in dealing with her disease.  Based on her prior hospitalization, she knew it would take a similar four weeks of intravenous antibiotics to treat her endocarditis, and yet, she tried to make it go away by shooting herself up with heroin, a habit that had all along contributed to her disease.  She was also childish in demanding a quick remedy for her withdraw symptoms, and it wasn’t until she had broken out of that spell that she began to take her other disease, endocarditis, seriously.  Even for that, she wanted a quick and easy fix, not realizing her own complicity in making the disease refractory to treatment.  In my own mind, Ms. K. had morphed from the patient we had grown to like – the hospitalized Ms. K. – back to the Ms. K. of the outside world, the one we had never known, but could surmise based on a reported history of prostitution and heroin use.  Not wanting to let that impression override the one I had built in the preceding weeks, I tried to think of Ms. K. along different standards, realizing that any achievement on her part would be nominal compared to patients who were more mature in dealing with their disease.  I tried to think of the changes that Ms. K. had made in recent days.  In her voice, right now, I heard it well enough, that she cared enough about her health to want it to get better.  For someone like Ms. K., that was quite a stride, one I’d like to remember her by.

Running away

Mr. C. was a 43-year old African American male who came in with cough, ataxia, and pain in his left shoulder that he attributed to a bicycle fall one week ago.  For his respiratory symptoms, he was diagnosed with Pneumocystic carinii pneumonia (PCP), and started on Bactrim.  We performed a thorough neurological exam for his ataxia and ordered a neurology consult, but neither suggested a direct etiology.  His ataxia gradually resolved as his respiratory symptoms improved. 

A shoulder X-ray revealed a distal fracture of Mr. C.’s left clavicle.  His arm was placed in a brace, and we advised him to limit use of his shoulder to allow the bone to heal.  Mr. C. insisted that he return to work so he could pay his rent, which we would have allowed, had his job not involved lifting heavy crates.  One day, Mr. C.’s wife and one of his two sons came to visit him at the hospital.  His wife was dressed in professional attire, presumably because she had just come from work.  The contrast between the two was like night and day – an emaciated, bedridden man sparsely clad in a hospital gown, over whom stood his portly wife, wearing a designer blouse and glittering of the jewelry adorning her body.  There was something stand-offish about the way she interacted with her husband.  Even though she had stood with him through the course of his disease, she just didn’t seem there with him now. 

While Mr. C.’s wife and son were visiting, we had to draw blood from his radial artery to measure his arterial blood gases, a procedure that elicits pain from even the toughest of patients.  Because his vessels were hard to find, we had to try multiple times, causing him to shout and cringe in pain.  All the while, his son stood over him and chuckled in amusement.  When we came into his room later that day, the wife and son had left, but Mr. C. said they would return the following day.  The next morning, I asked Mr. C. when he was expecting his family, to which he replied, “Oh, my wife couldn’t make it because of the rain.  She doesn’t like coming out here in this kind of weather.”  I never thought of a few sprinkles as enough to keep a wife from seeing her husband.

Mr. C. was in a hurry to get out of the hospital.  We had planned his discharge to be on a Saturday, but that Friday, Mr. C. insisted on leaving.  Late in the afternoon, I went to the pharmacy with his prescriptions, but his insurance plan required a $45 co-payment.  On hearing the news, Mr. C. said he didn’t have the money. “My wife wouldn’t have the money, and my son’s got enough of his own things to spend his money on.”  Mr. C. knew he was in a bind, since the pharmacy was about to close, and we wouldn’t discharge him unless he had his medications in hand, so he reached into his wallet and pulled out $22, nearly half of the required payment.  I brought the money down to the pharmacist, who, not surprisingly, accepted the payment.  Mr. C. knew the system well.  He knew the bare minimum it would take to leave without any further objections on our part, and he met that minimum, right on the spot.

One week later, Mr. C. came back to the hospital.  His pneumonia had resolved, but his ataxia had worsened, and he looked more emaciated than before.  He complained of fevers, abdominal pain, and vomiting and diarrhea, and with a sputum sample returning positive for acid-fast bacilli, he was diagnosed with Mycobacterium avium complex (MAC), an infection appearing in patients with a CD4 count below 50.  To no surprise, Mr. C. had gone against our advice and resumed the heavy lifting at work, so his arm hung drearily in the sling, more immobilized than before.  During morning rounds, a social worker told us that she had spoken with Mr. C. about his domestic situation, a subject that caused him to become teary-eyed.  According to the social worker, Mr. C. had suffered abuse at home.  He would repeatedly ask his two sons to pay rent for living at home, and not only would they refuse, they would physically assault him.  The role of the wife in the family was never elucidated, but it clear she never intervened on her husband’s behalf. 

During Mr. C.’s first hospital visit, it wasn’t clear why he was in such a rush to leave.  He could have been running away from his disease, inuring himself to his HIV and fracture injury by busying himself with manual chores.  Judging from the story the social worker had elicited, though, it wasn’t his disease, but his abusive family, that Mr. C. was running away from, and work was the only place he could go to escape from it.

Terminal stage

Mr. S. was in the terminal stages of AIDS.  He was a 27-year old Caucasian male who three years ago had achieved sobriety from an addiction to crack cocaine, only to be diagnosed one year later with non-Hodgkin’s lymphoma.  Much of the discussion at team rounds was on whether he could be transferred to a hospice in time, so he wouldn’t have to die in the hospital.  Walking in with the team one morning, I saw a thin and emaciated man, unable to move any part of his body.  His eyes were open, but he was unable to speak, so it was only through blinks of his eyes or nods of his head that we could ascertain a response from him.  He leaned against the railing on the right side of his bed, a position that allowed him a better view of the wall across from him.  On following his eyesight, I saw an enormous montage of photographs of Mr. S. with his wife and daughter, a collective snapshot – and immortalization – of all the happy moments they shared together.  The pictures were neatly arranged in rows and columns, with letters inscribed along the top to read, “Goodbye daddy, we will miss you.”  Looking closer at Mr. S’s face, I noticed there was a teardrop tattooed to the side of his right eye.  Though it occupied a miniscule fraction of his face, it made his expression entirely sullen. 

My first experience with AIDS before coming to medical school was in volunteering at an AIDS hospice.  Being at a hospice meant that a patient was past the worst stage of the disease, no longer shuttling in an out of hospitals, no longer doused with enough drugs to make the side effects yet another a medical burden.  Being at a hospice meant that a patient was finally in a constant environment where medical therapy could take a backseat to a more holistic approach to palliative care.  A hospice was a place where a patient could have the time and space to negotiate the finals months of their lives, a place where people could find them to make a final parting, or a first appearance after years of estrangement.

A hospice, or any environment which houses a patient in the terminal stages of a disease, is a space in which all things of importance in that patient’s life can find final congregation.  These include both the inanimate – pictures, mementos, books, and records – and the animate – friends and family, who bring with them the panacea of their company, as well as memories of the past and memories to come. 

Posterity

In the earlier years of HIV/AIDS, an AIDS community was able to come together not only through the shared experience of the disease, but also through the unity of their sexual identity, further linked by a fervency in fighting a government and medical community that were inert in responding to what was considered a “gay disease.”  People in the AIDS community, unable to live the full breath of their lives, mobilized the media and the arts to document their struggles, to leave for posterity narratives and other art forms that chronicled their lives, as shaped and changed by the disease. 

Since then, the demographics of the disease have changed.  The virus now finds haven in the inner cities, a population not as well unified, not as empowered by the various forms of mass communication, not as impassioned to leave for posterity their own stories of living with HIV/AIDS.  As medical students and physicians, we should help patients find a voice – a voice that dispenses of catharsis on being spoken, a voice that finds resonance within a larger community, a voice that speaks to us about the circumstances that complicate an already devastating disease.  The history of HIV/AIDS has yet to find an end in sight.  We may, in the course of our careers, travel only a short distance along its entire history, and as such, we should – for ourselves and for our patients – leave for posterity a chronicle of what it was like to be there, in the trenches, that very moment in time…

Published: February 21, 2003