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Dying in the Twenty-First CenturyToward a New Ethical Framework for the Art of Dying Well$

Lydia M.D. Dugdale

Print publication date: 2015

Print ISBN-13: 9780262029124

Published to MIT Press Scholarship Online: January 2016

DOI: 10.7551/mitpress/9780262029124.001.0001

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AIDS, the Modern Plague

AIDS, the Modern Plague

Chapter:
(p.161) 10 AIDS, the Modern Plague
Source:
Dying in the Twenty-First Century
Author(s):

Peter A. Selwyn

Publisher:
The MIT Press
DOI:10.7551/mitpress/9780262029124.003.0010

Abstract and Keywords

Peter Selwyn, a front-line “AIDS doctor,” revisits the bedsides of his dying patients, recounting the lessons learned from the early years of the disease, when no treatments were available and caregivers could do little more than stand with their patients in humble solidarity. Advances in drug therapies, however, have radically changed the nature of care for AIDS patients, and have threatened the unmediated human connection between patient and caregiver. Selwyn’s comparison of early and current approaches to care of patients suffering from AIDS offers insight to all who may be tempted to hide from their own anxieties about life and death behind a thin partition of machines, drugs, and statistics.

Keywords:   AIDS, HIV, Solidarity, Doctor-patient relationship

Thirty years have passed since the onslaught of the AIDS epidemic in the United States, a generation-long time period that has seen profound changes in how people with AIDS live and die. At first AIDS was a mysterious and terrifying plague; then it was a more narrowly circumscribed, medically manageable disease. Its fundamental clinical characteristics as an illness were completely transformed in little more than ten years. Most recently, for long-term survivors first infected in the 1980s, the disease has become a complex mix of multiple co-morbidities and “accelerated aging” over a much longer trajectory; patients pass through life milestones that they had never thought they would reach, accumulating more and more co-morbid illnesses along the way. These include conditions such as heart disease, diabetes, kidney or liver failure, osteoporosis, neurodegenerative disease, and a range of cancers that are not specific to AIDS or its causative virus, HIV. The irony, not lost on some, is that the “success” of surviving longer with HIV now brings with it the “reward” of being vulnerable to illnesses that, in an earlier era, those infected with HIV wouldn’t have lived long enough to experience. During this evolution, AIDS has both shaped and reflected how we think about the dying process and death itself. Lessons from the care of patients dying from AIDS offer illustrations that hint toward what might be a contemporary Ars moriendi or art of dying.

Early AIDS as Plague: Stepping Into the Waves

In the early 1980s, after a long postwar period of advances in medical therapeutics that has been termed the pax antibiotica,1 AIDS emerged as if from nowhere. It was a rapidly fatal illness that killed young adults with brutal efficiency, a plague with which modern society had no experience. Not (p.162) only were these young men, women, and sometimes even children dying before their expected time; they were dying of a wide array of infectious diseases and rare cancers that had never been seen in such concentrations in any one population. The disease progressed fiercely and relentlessly, and doctors often had no choice but to observe helplessly as the common complicating milestones—oral thrush, bacterial pneumonia, pneumocystis carinii pneumonia, cerebral toxoplasmosis, cryptococcal meningitis, disseminatedm. avium complex disease—flashed by like the stations left behind by a runaway train. We learned over time to diagnose and treat these complications better, and eventually to prevent some of them, but for close to a decade there was little if anything we could do to change the speed or the direction of the train.

This was a time of vulnerability for both patients and their care providers, and also a time of solidarity; there was a palpable sense that everyone was in it together. Both patients and clinicians felt the absence of the protective medical armamentarium upon which physicians rely in order to shield themselves from feeling helpless. So we doctors from the early years of AIDS learned simply to be present. Out of our medical comfort zone where doctors are accustomed to trying to isolate and fix specific problems, we learned the power of empathic listening, witnessing, and accompanying patients and families along this difficult journey. I had a social work colleague from those years who would describe the feeling of “stepping into the waves,” to take the hand of each new patient who was washing up onto the beach. She knew that each one needed her as much as the last one she had gone to help out of the water, and that there would be an endless number of new ones to take their places, but the act of reaching out, of comforting, of accompanying, was the same for each.

Without the familiar tools that serve to routinize our interactions with patients and give the perception (if not illusion) of control over life and death—antibiotics, chemotherapy, surgery—we learned by necessity of the importance of being with patients, without turning away, through the course of a fatal disease. It took a disease we couldn’t cure to teach us the true meaning of healing.

With no treatment even imaginable, and before the fundamental pathogenesis of AIDS as a blood-borne, virally transmitted illness had even been envisioned, we faced much fear, ignorance, and associated stigma. This wasn’t yet the stuff of celebrity benefit concerts or fundraising walks; it was (p.163) too raw, too dreadful, too untamed. Any association with AIDS tended to engender stigma, discomfort, and a sense of the dangerous “other.” This social distancing extended both to patients and to their care providers; people with AIDS were routinely shunned, dismissed from jobs, blamed for having “brought this on” themselves, or declared to be receiving God’s punishment for their immoral behavior. As a doctor, I experienced more subtle social distancing: after learning at a cocktail party of my occupation, a new acquaintance would make a discreet trip to the bathroom in order to wash his hands.

Yet this type of exclusion also united patients and their caregivers as part of a special community of loss and suffering. Rejected or ignored by the rest of society, which was initially quite slow to respond to the disease even at the highest levels of government, many of those affected by AIDS created social networks of caring and support, both within and outside of traditional medical systems. By the mid 1980s, in the most geographically concentrated areas—starting in urban New York and California—the disease had begun to affect multiple members of high-risk populations in a manner that escalated dramatically. Before long, in those early years, everyone in certain affected communities knew someone who had AIDS or who had died of it. Social networks began to be infiltrated by disease, first as isolated cases, and then in a growing swell of commonality. This pattern would repeat itself in villages in sub-Saharan Africa more than a decade later, where coffin makers began to observe an inexorable and unprecedented increase in demand for their craft as the epidemic spread. The disease continued to take hold, and the number of funerals in certain urban neighborhoods in New York and California began to grow eerily beyond anyone’s expectations.

Multiple losses led both to a greater burden on the affected communities and to a sense of shared loss and solidarity in suffering that was less isolating than for those who perceived themselves to be suffering alone. Such solidarity in suffering also led to memorable acts of courage, and sacrifice, such as when ACT-UP activists chained themselves to the gates of the National Institutes of Health demanding increased access to experimental therapies. On another occasion, during the first placebo-controlled trial of AZT (also called zidovudine)—the first and only antiretroviral agent available at the time—study participants defied the study investigators and decided to mix the placebo pills with the active drug pills. Each would then draw from the (p.164) combined pool in order that everyone would be able to have at least some of the active drug. In many instances, infected partners at different stages of advanced HIV disease continued lovingly to care for each other even as the disease threatened their physical and mental faculties. In many ways, just as it carried stigma and opprobrium in the larger society, AIDS brought out the brave and shining humanity of many of those personally affected by it.

I recall a couple of years later, after AZT had been approved and was in clinical use, being at a rally in Washington in support of more government funding for AIDS. In a sea of marchers I suddenly became aware of the repetitive sounds of beeper alarms and other electronic chirps rippling through the crowd: these were the every-four-hour alarms of patients who, at the time, had no choice but to take AZT six times per day. In those early days when AZT was the only available treatment, it came in high doses with severe side effects, and yet patients did whatever they could to make sure that they didn’t miss a single dose.

Now the standard treatment for HIV infection is one pill once a day, combining three medications in one pill, with much greater efficacy and much less toxicity; the stakes seem somehow less dramatic, the act of taking daily medications more mundane. Much of the focus of clinical visits for patients with AIDS is now on “adherence,” and the medical literature abounds with reports of different strategies to ensure adherence and help patients remember to take their daily doses; poor adherence is the leading cause of the development of HIV resistance. These concerns were not on the horizon in those early years, when even the act of prescribing AZT—toxic, not very effective, difficult to take—seemed like a sacrament.

The power of the affected community was palpable not only in the fierce desire to live and to provide support in surviving, but also in the experience of death. Mutual support in bereavement, the importance of group and community rituals, and the use of art and music as channels for remembrance, celebration, and transcendence, were all powerful counterpoints to the experience of medical helplessness in witnessing this spreading plague. Friends, family members, caregivers, and volunteers came together out of necessity, commitment, and love, with the basic dedication to ease the burden of suffering as the disease ravaged individuals, families, and communities.

For patients and populations that were too readily written off or marginalized by the mainstream, the simple act of memorializing took on great (p.165) power and meaning. I recall going to a concert one evening at the Cathedral of St. John the Divine in New York City. It was some years into the epidemic, and I stopped in front of a simple candle-lit parchment on the wall of an alcove with the words written on it, “In memory of those who have died of AIDS.” Reading those words filled me suddenly with sadness, but at the same time inspiration, and with a kaleidoscope of memories I reflected on all my patients who by that time had died. On another occasion, I went with my family to view the AIDS Memorial Quilt which had been unfurled on the National Mall in Washington. Stretching from the Washington Monument to the Capitol, these stitched-together panels each told a powerful story of individuality, community, and love, and together amounted to an incredible evocation of the interconnected souls of all those who had been brought together by AIDS. Other times, more simply, in our AIDS treatment program, we would gather periodically—patients, families, staff—light a candle, and read the names of the patients who had died in the last month, stopping after each name to let our collective memories come into the room and linger in the candlelight.

When I initially started caring for patients with AIDS in the early 1980s, my first job was as medical director of the substance abuse treatment program at Montefiore Hospital in the Bronx, the same hospital where I had just finished training. This program, which consisted of close to 1000 current or former injection drug users on methadone maintenance therapy, was a site for some of the earliest studies of AIDS and drug use. Soon after the HIV (or then HTLV-III) antibody test was developed which enabled us to detect HIV on routine laboratory testing, we conducted one of the first studies funded by the Centers for Disease Control (CDC) of the prevalence of HIV infection among drug injectors. We found to our alarm that close to 50 percent of the patients were already infected with HIV. With no treatment available (AZT was introduced in 1987), we tried to prepare ourselves and the patients for the reality that all those infected probably were going to get sick and die within the next several years. This was both a grim assessment and also, oddly, a source of connection and community: patient support groups, peer education and outreach initiatives, and advocates for expanding AIDS services united in a common cause, resulting in a form of empowerment within the larger context of a loss of control.

Feeling helpless in the face of looming death and wanting at least to acknowledge the impact of this plague on our community, I started to go (p.166) to patients’ funerals. I recall the first I attended at a small funeral home in the South Bronx. I entered the darkened room uncomfortably. The casket sat at one end, and people sat in rows of chairs facing it. I felt somehow that the family would be angry with me for coming since I had not been able to save their son. (I had not yet learned to appreciate the role of the physician as witness to and partner with dying patients; I had at that point only internalized the larger cultural stereotype of physician as rescuer or savior.) Instead of being angry, the family was deeply moved and grateful to see me, all standing up to surround me, give me hugs, thank me for taking care of him and for coming to pay my respects. Other times, I would go to patients’ funerals along with other patients from the methadone program, themselves HIV-infected, struck by their courage and community as they honored their friends who had died, just as they knew that they themselves probably would soon be in the same situation. I recall one patient, tall and by then stick-thin from advanced AIDS, getting up with great effort from his chair in the funeral home where his friend lay in the open coffin in the front of the room (the body also clearly emaciated from the disease, seeming very small, laid out in the oversize suit that didn’t come close to fitting anymore). Standing by the edge of the coffin, resting his hand on it, the dying paying respects to the dead, seeming to bridge a very narrow divide between this world and the next.

Caring for so many young patients who were dying—most of them in their early to mid thirties, many of them within five years of my own age at the time—I felt both a greater kinship and a greater vulnerability than in my previous experience in medical school and residency, when the patients I had cared for who died were very few and also mostly much older. I remember watching a young father have to say goodbye to his two small children, feeling powerless to do anything to prevent his death, and then going home to my own two small children safely tucked in their beds for the night. This pulled at my heart in ways I have not experienced before or since, and it made me better able to support this patient and many others as they confronted these terrible situations along the way. I learned the difference between pity and compassion, between sympathy and empathy: the important distinction between feeling sorry for someone and feeling sorry with someone.

I also learned how these feelings of loss and sadness, triggered by my experiences with dying patients opened the way for me to appreciate and (p.167) grieve my own losses, losses of which I had not been fully aware, most important the sudden death of my own father when I was an infant.2 This was perhaps the greatest gift of working with AIDS patients, both for myself personally and in my role as a physician: recognizing that we are all living and dying, we all suffer loss, and that keeping our heart open to feel and experience our own pain is a powerful way both to help heal ourselves and be a healer for others.

For too long, doctors have been taught (whether overtly or by role modeling and the unconscious culture of medicine) to suppress their emotions or identification with the patient, as if this threatens to compromise professionalism or cloud clinical judgment. Though it is essential for professional caregivers not to let their own emotional issues interfere with effective care of patients, I believe that it is equally important for caregivers to keep their hearts open, to recognize their own vulnerability, losses, and less-than-omnipotence. In these ways doctors can be truly present with patients and offer deeper healing. The losses that we experience ourselves, the different but common ways in which we are all “broken” by the world, prime us to be able to understand and appreciate the pain and loss of our patients. A heart that has been broken gains greater capacity to connect with the suffering other. We are not professional voyeurs; we are, more humbly, partners, fellow travelers. As Leonard Cohen put it in his song “Anthem,” “There is a crack in everything / That’s where the light gets in.” AIDS cracked open the facade of complacency that protected us from our own vulnerability; it disrupted everything, and also allowed our common humanity to shine through.

People described the onset of the AIDS epidemic as an earthquake or tsunami, arriving suddenly, unexpectedly, and devastating everything in its wake. Doctors were faced with an almost existential choice: do I stay, leave, or run toward the devastation? As with any disaster response, the initial tool bags were make-shift. In heavily affected areas, primary care doctors, infectious disease specialists, oncologists, and substance abuse treatment providers, each had to respond uniquely to the consequences of the disease expressing itself in their specific populations. But there was no credentialing, professional certification, or textbook; models of care and caring were developed by those who were on the front lines when AIDS hit. For the first generation of AIDS care providers, expertise was simply the byproduct of experience. It would take a decade for younger trainees and students to commit to AIDS care as a potential career option. And with the first (p.168) generation of AIDS doctors on its way to retirement, there are, thankfully, more of these reinforcements on the way.

But as often happens in the aftermath of a crisis, the critical lessons fade with time. We have perhaps lost the humbling immediacy of relationship with patients, relationships characterized by caring for those in front of you without flinching, while recognizing full well that you cannot prevent what is coming next. It is, of course, a great relief that we now have more treatment options, and the sense of fate and inevitability which permeated those years is no longer the norm. Still, our ability to move comfortably, or at least with more familiarity, in caring for patients with AIDS, seems to have taken us further from the dying and further away from being simply present with those who are dying.

From Certain Death to Chronic Disease

Now AIDS has become a treatable, manageable disease; it has, in effect, become “tamed,” to appropriate the term suggested by Philippe Aries,3 by which I mean that its manifestations have been well described and are often controllable, its expression is more circumscribed, its trajectory less unstoppable. It is only when we see a patient who has not been able to benefit from the current treatment paradigm—whether as a result of delayed diagnosis, or social or behavioral problems interfering with care, or of other disparities in treatment access and outcome that are heavily weighted toward poor and underserved populations—that we are reminded of the unmediated force of the disease in its untreated form.

Despite being “tamed,” AIDS still poses many challenges, including how to handle a chronic illness with multiple co-morbidities, and how to age with (as opposed to how to die with) the disease. These challenges can be overlooked amid the busyness and demands of routine clinical care. Furthermore, many of the AIDS specialists who trained after the advent of highly active antiretroviral therapy don’t have substantial experience in working with patients at the end of life. This may result in an inattention toward issues related to the dying process, and may limit a doctor’s ability to accompany patients through these phases when they do occur, as they inevitably do for all of us.

AIDS care, at least in its medical aspects, is now largely defined by a treatment paradigm which seeks to engage and maintain patients on (p.169) antiretroviral therapy (or, more specifically, “highly active antiretroviral therapy,” universally referred to as HAART). These therapeutic agents have been developed and marketed with astonishing speed, from the first characterization of the human immunodeficiency virus (HIV) in the mid 1980s, to the development of therapeutic strategies for drug development and testing, to the marketing and widespread use of more than 25 anti-HIV drugs in less than 20 years. These drugs have completely transformed the clinical management of HIV disease and AIDS, and for patients who are diagnosed and started on treatment before they have already experienced severe immunodeficiency, the projected lifespan has started to approximate that of comparable individuals without HIV infection.

While these changes in treatment for HIV/AIDS have been a welcome advance for patients and their care providers, the discussion surrounding antiretroviral therapy has now become more narrowly focused on patients’ adherence to these medications, management of side effects, and monitoring of associated laboratory tests. These approaches mirror much of the broader practice of medicine, which tends to be reductionist and “problemoriented.” The implicit assumption is that problems are best addressed by isolating them, identifying the working and non-working parts, and then intervening to “fix” what doesn’t work. The current treatment era has brought HIV much more squarely into this cultural comfort zone. The examining room discourse typically relies on questions such as, “What are my numbers?’ and doctors may likewise dwell on the mechanics of how patients are taking their pills every day. When patients don’t take their medications regularly, or when there are other problems that interfere with their ability to care for themselves—such as mental health problems, substance use, homelessness, or coexisting medical problems—this can lead to frustration and sometimes disaffection on the part of the patient, the doctor, or both. I recall a particularly exasperating clinic visit with a patient who insisted that he was taking his medications despite significant laboratory evidence to the contrary. Whereas in the pre-HAART era it felt as if the doctor and the patient were allied against the disease, it now sometimes feels as if the doctor and the therapy are allied against the patient—an unfortunate by-product of the emergence of the therapeutic era for HIV/AIDS.

Another consequence of the emergence of the successful treatment era for HIV/AIDS is that the outcome following a diagnosis of AIDS no longer follows a uniform, inevitable path. What has been referred to as the (p.170) “grim democratization of AIDS” in the pre-treatment era, when all patients seemed to die rapidly and predictably, has now been replaced by a regrettably familiar pattern such as is seen for most if not all other chronic diseases, in which social inequalities, poverty, and marginalization of vulnerable populations have emerged in the HAART era. The current therapeutic paradigm has rapidly shifted, with good reason, to a focus on engagement and adherence with effective antiretroviral therapy. In short, patients are no longer “supposed to” die. The effectiveness of therapy implies that a death due to AIDS must be an aberration, a failure, an isolated event. Far from the days of frequent funerals and memorial services, now when patients with AIDS die, at least in the developed world, the implication, whether stated or even perceived, is that this should have been preventable. This may tend to impose an added burden on patients, caregivers, and survivors: that earlier community of shared suffering and experience is often no longer present; it has been replaced by individual regret, second-guessing, and assigning blame. Before treatment existed, when death was inevitable and the trajectory was swift and uniform, it seemed almost that dying was a matter of “fate”—that is, something unavoidable, universal, and expected. Once effective disease-modifying treatments became available, “fate” was somehow transformed into “tragedy,” a separation between what was happening and what might have been, a terrain of “what ifs,” choices taken and not taken, and more a function of individual responsibility and agency.4 This brought more of a quality of empowerment for patients, who now had more potential control over their destinies in the treatment era, but it also could bring a more isolating feeling of personal failure when patients died, for both patients and doctors.

With less focus now on end-of-life issues in the daily experience of HIV/AIDS, death can be an uncomfortable and unwelcomed topic for physicians, patients, and families. This is particularly true for newer generations of AIDS care providers who didn’t live through those early years when death was, unfortunately, not a stranger to anyone. As with other chronic illnesses such as diabetes, cardiovascular, or chronic pulmonary disease, clinicians often don’t dwell on end-of-life care or the anticipation of death. Rather, they pay more attention to treating the acute complications and monitoring the exacerbations and remissions of a slowly progressive illness. While important, this focus also can obscure a more fundamental attention to the dynamics of disease progression, and the importance of addressing (p.171) goals of care, anticipatory grief and loss, and other equally important issues that may not be as starkly defined as they once were. As a culture, and as a profession, we tend not to want to “go there.” When the disease was untreatable, “going there” was unavoidable; now, as a profession, we are more comfortable surrounding ourselves and our patients with all the other more familiar comforts that compete for our attention.

Living and Dying with a View onto an Unfamiliar Landscape

Though no one would want to return to the terrible early years of the AIDS epidemic, I would hope that some of the lessons learned from that experience could continue to inform our current practice and sensibility. It was as if a window briefly opened onto a landscape unfamiliar to most physicians, in which we couldn’t make use of many of the disease-modifying tools that had come to define late-twentieth-century medicine. Yet in that same landscape we could experience both the vulnerability and the power of accompanying our patients on the journey of dying, could learn how to witness and to be present for our patients and their families with an open heart, and could learn how to bring our own wounded humanity into this relationship without losing ourselves along the way. With the advent of the HAART era, that window has closed, and the day-to-day reality of medical care for AIDS has become much more narrowly defined. Combining effective disease treatment with the sensibility to move through to that other landscape remains a challenge.

Notes

(1.) Nicholas Wade, “Method and Madness: Pax Antibiotica,” New York Times, October 15, 1995.

(2.) Peter A. Selwyn, Surviving the Fall (Yale University Press, 1998).

(3.) Philippe Ariès, Western Attitudes toward Death: from the Middle Ages to the Present (Johns Hopkins University Press, 1974).

(4.) Peter A. Selwyn and Robert Arnold, “From Fate to Tragedy: The Changing Meanings of Life, Death, and AIDS,” Annals of Internal Medicine 129, no. 11 (1998): 899–902. (p.172)

Notes:

(1.) Nicholas Wade, “Method and Madness: Pax Antibiotica,” New York Times, October 15, 1995.

(2.) Peter A. Selwyn, Surviving the Fall (Yale University Press, 1998).

(3.) Philippe Ariès, Western Attitudes toward Death: from the Middle Ages to the Present (Johns Hopkins University Press, 1974).

(4.) Peter A. Selwyn and Robert Arnold, “From Fate to Tragedy: The Changing Meanings of Life, Death, and AIDS,” Annals of Internal Medicine 129, no. 11 (1998): 899–902. (p.172)