Unsung Heroes: Gay Physicians’ Lived Journeys During the HIV/AIDS Pandemic

Literature Review

At the time of the study, only two types of literature pertaining to the study’s topic, that is, The Use of Experiential Learning in the Transformation of the Medical Practice of Six Professionals in the Context of the HIV/AIDS Pandemic, ² were available. They included books written by several nonmedical authors setting the study’s context, as well as autobiographies written by medical and nonmedical authors providing a firsthand account of physicians’ lived journeys. These two types of literature served to establish a preliminary understanding of the patients’ trajectories from the onset of the infection to the patients’ death. They also provided an account of physicians’ journeys from the onset of the infection to their patients’ death and beyond, including attending their funerals, for example, at different key periods of the pandemic’s trajectory. These key periods were identified as follows: Period 1, HIV/AIDS Emergence; Period 2, Recognized Pandemic and Militancy Rise; and Period 3, HIV Chronicity and Militancy Decrease (see appendix—HIV-AIDS Pandemic Trajectory: Three Periods). A few examples of the books and autobiographies from nonmedical and medical authors are highlighted here for their significant input into the study.

In their book titled Good Doctor Good Patients: Partners in the HIV Treatment, Rabkin, Remien, and Wilson (1994) present patients’ and their physicians’ beliefs about the characteristics of and expectations from the physician–patient therapeutic relationship. They discuss medical and psychological challenges faced by both physicians and patients from the initial HIV/AIDS diagnosis up to and including the end-stage of the disease, and the dying process. They also describe specific skills and strategies that physicians can use to meet these challenges and discuss the role that friends, family, and professional counselors play in addressing the ongoing challenges of living with HIV/AIDS. In Reports From the Holocaust: The Story of an AIDS Activist, Kramer (1994) shares his views as an AIDS activist and advocate, as well as on AIDS and LGBT civil rights from the beginning of the pandemic. In addition, he documents his time spent working in community organizations against HIV/AIDS (e.g., Gay Men’s Health Crisis and ACT UP) and beyond. As for Shilts (1988), in his book titled And the Band Played On: Politics, People and the AIDS Epidemic, he discusses the discovery and spread of HIV/AIDS and comments on the government’s indifference and political infighting during the early 1980s.

In his autobiography titled To the Friend Who Did Not Save My Life, Guibert (1993) shares his own journey on his AIDS-related physical and psychological suffering, and reveals his physician–patient therapeutic relationship. Hodge-Wright (2004), in her autobiography titled Life Lessons: Stories of Hope, Love and Laughter in the Face of AIDS, discloses stories of love, betrayal, forgiveness, and joy from the counseling experiences which impacted her life. She also reveals her efforts to find meaning in every positive and negative life experiences, including when individuals are confronted with AIDS. As for Whitmore (1988), in Someone Was Here: Profiles in the AIDS Epidemic, he tries to humanize the notions of illness, epidemic, and courage by reaching out to men and women whose lives were changed by the HIV/AIDS epidemic. In fact, these autobiographies, and many more, present the human toll of the HIV/AIDS pandemic (see also Bluestein, 1997; Callwood, 1988; Cox, 1990; Gélinas-O’Meara, 1994; Kavanagh, 2007; Monette, 1988; Oyler, 1988).

In his autobiography titled The Least of These My Brethren: A Doctor’s Story of Hope and Miracles on an Inner-City AIDS Ward, Baxter (1997) shares the life stories of suffering and redemption of HIV/AIDS patients. These stories capture the hope and miracles he encountered while attempting to treat HIV/AIDS patients during his three and a half years in a New York AIDS center. In My Own Country: A Doctor’s Story of a Town and Its People in the Age of AIDS, Verghese (1985) tells a story of the AIDS epidemic inside a hospital in rural America while confronting his own prejudices and fears. In Strong Shadows: Scenes From an Inner City AIDS Clinic, Zuger (1995) presents stories of HIV/AIDS patients she attempted to treat by illustrating their struggles with infections and medications, as well as the effects on them and their families. As for the book titled AIDS Doctors: Voices From the Epidemic. An Oral History, authors Bayer and Oppenheimer (2000) recount the stories of 73 physicians whose lives were centered on the HIV/AIDS pandemic (see also Boulanger & Thomas, 2008; Cyr, 2001; McCoy, 2005; Olivier, 1996; Scannell, 1999; Selwyn, 1998).

Themes

The books and autobiographies mentioned in the literature review helped to identify the themes needed for the preparation of the semi-structured interview grid and the creation of the initial conceptual taxonomy that was used to organize and analyze data. The following themes emerged initially, as they were frequently mentioned and emotionally charged. Physicians highlighted the impact of the emergence of HIV/AIDS, their recognition of the epidemic and the pandemic on them, their patients, and their profession. They mentioned, among other themes, the uncertainties generated by a multiplication of scientific and medical discoveries/findings, as well as the developments in the treatment of opportunistic infections related to the HIV infection. Physicians also talked about the perceptions they and other physicians held about sexuality, drug use, and HIV/AIDS. Finally, they disclosed how they modified the way they practiced medicine at the outset of their careers, moving from a physician-centered practice toward a more patient-centered practice.

Category 1: Transformation of the Physicians’ Identities: Personal and Professional

Following the growth of the pandemic, physicians reported noticing the transformation of the perspective they held of their personal and professional identities. At the personal level, physicians were led to reconsider and alter their medical practice. For some physicians, this meant, first, that they would devote more time to the treatment and care of patients from the gay community to which they belonged and, second, that they would demonstrate their commitment to and solidarity with their community by advocating and lobbying personally on their behalf. In other words, at the personal level, these physicians were involved not only as physicians but also as openly gay physicians.

. . ., we got involved . . ., that was our involvement (Doctor Antoine). (p. 150)

. . ., at the start of my career, I was always open about my sexuality, but then, I was openly gay. I was no longer scared of being an openly gay physician . . . There were many gay physicians who decided to get involved in the treatment of HIV-infected gay patients. We took control of our patients. We became their spokesperson (Doctor Denis). ³ (p. 150)

At the professional level, a paradigm shift took place concerning their role. First, they became committed to the development of professional knowledge related to medications (drugs) and treatments. In Doctor Claude’s words, “We participated in the development of almost all new drugs” (p. 151). They started conducting research protocols with the patients’ voluntary participation. Therefore, they went from being medical practitioners to being medical researchers practitioners.

Second, physicians were called upon to play other roles besides the traditional doctor role, such as social worker, psychologist, guide, counselor, and trainer, as well as educator.

At that time, we were not only physicians . . .; we were also social workers (Doctor Antoine). (p. 156)

. . . even if you are a doctor, all you can be, is a guide. . . . In many cases, we are also the psychological support, the moral support (Doctor Denis). (p. 156)

. . . our role is to offer advice (Doctor Edgar). (p. 156)

. . . I am a guide. I am a trainer for my patients (Doctor François). (p. 156)

I take care of . . . their medical education . . . I tell them to protect themselves and others with whom they are having unprotected sex. I talk to them about the potential risks to themselves, such as being contaminated by another HIV strain during unprotected sex. I then talk to them about the possible impacts that they were not aware of, one day, that they may have transmitted the HIV infection to someone else. My reaction was to do some sex education (Doctor Claude). (p. 167)

Because of the unusual high occurrence of death among their patients, physicians faced disorienting dilemmas that led them to modify some of the perceptions that they held about their medical practice. The following are examples of various dilemmas they encountered.

Category 2: Physician–Patient, Professional, Pharmaceutical, and Community Network Relationships

Following the growth of the pandemic, physicians mentioned perspective transformations in the physician–patient therapeutic relationship, patient empowerment, and medical therapeutic conversations, as well as in their professional, pharmaceutical, and community network relationships.

In their medical practice, physicians were compelled to transform the physician–patient therapeutic relationship because of the significant role social movements against HIV/AIDS played in HIV/AIDS information dissemination to its membership, and the growing number of informed and empowered patients they treated. This situation compelled physicians to adopt a more egalitarian therapeutic relationship. In fact, they started engaging in sustained and challenging therapeutic conversations with their patients. Physicians realized that they could not actively continue to confront, judge, or even ignore them. Therefore, they had to explain the decisions they made regarding their patients’ health and pay more attention to their choice of words when having to provide advice, discuss options, and negotiate treatments and medications, as well as the start or cessation of a treatment and/or medication.

When you treat those patients, it is more stimulating. When you tell those patients to take such and such a drug, they ask you why they must take that one and not another one. You must explain your decision (Doctor Antoine). (p. 207)

I explain more my train of thought and the drug that I am going to prescribe when I treat those patients. I take more time to explain how I arrived at that decision (Doctor Bernard). (p. 207)

What I learned is that it is important to be careful not to be confrontational with those patients. . . . I am sometimes in a situation where I must learn to negotiate with those patients, for example, when to start or to end a treatment (Doctor Claude). (pp. 168, 207)

We do not judge patients (Doctor Antoine). (p. 168)

What I learned is that I must . . . respect the patient who got infected and who lives with the HIV infection (Doctor Denis). (p. 168)

Physicians also modified their medical practice to strengthen the criteria surrounding privacy, while continuing to comply with the requirements prescribed by law (mandatory reporting), to address the new patients’ demand (non-disclosure).

The doctor-patient relationship is one that stays between four walls. Very often, we are the only ones who know that someone is HIV-positive. Their workplace doesn’t know it. Their friends don’t know it (Doctor Antoine). (p. 165)

The patient did not want the reason for his death mentioned on his death certificate (Doctor Denis). (p. 165)

Physicians realized that the border (therapeutic distance) between themselves and their patients was gradually blurring as more and more of the patients who sought their HIV/AIDS expertise had often been their friends, lovers, colleagues, or co-gay community members.

It was a clientele to which I identified a lot with because these men were like me, at that time, young gay men who were discovering themselves a little, who were starting to live their gay life (Doctor Claude). (p. 165)

The doctor-patient border was not very strong. Often there was none. I began to see friends at the clinic . . . And I remember when a great friend of mine, a work colleague, came to see me at the clinic (Doctor Denis). (p. 166)

Moreover, physicians often had a “history” with these individuals. They were their patients before they were diagnosed, up to their death and beyond, as many physicians started attending their patients’ funerals, a rare occurrence before the pandemic.

I am close enough to my patients. . . . I developed a stronger bond with some of them. When you have been treating them for over twenty years, you develop a stronger bond with them (Doctor Claude). (p. 166)

It was important that I be there, when HIV was discovered, during the period of opportunistic infections, and at the end of the HIV trajectory, to be able to say goodbye. I attended my patients’ funerals (Doctor Denis). (p. 166)

Through this renewed physician–patients therapeutic relationship, physicians developed a greater understanding of their patients’ distress/helplessness. Moreover, they became cognizant of their non-inhibited sexual behaviors.

My patients tell me everything, their intimacy, the emotions related to their sex life, their preferred drugs, and their cruising habits. . . . A patient started telling me that he went to the sauna . . ., where everyone, it seems, goes to have sex. It is not well looked upon for someone to put on a condom in that sauna (Doctor Claude). (pp. 170-171)

A patient told me that he had had many partners who did not protect themselves . . . (Doctor François). (p. 170)

Patients would tell me about the rave parties they attended . . . (Doctor Denis). (p. 170)

They also learned about their patients’ rejection, on a regular basis. In Doctor Edgar’s words, “Patients would tell me about the rejection they face from society in general and from the gay community in particular . . .” (p. 171).

At some point during the pandemic, some physicians understood that they had to start rebuilding the boarder (therapeutic distance) which had once existed between themselves and their patients to be more effective and efficient. In fact, this therapeutic distance was essential in repositioning the physicians’ role, in changing certain habits, or to educate their patients on health, sexuality, and blood-transmitted infections, among other topics.

. . . physicians had to start rebuilding the therapeutic distance, a distance between a doctor and the infection of his patients, the distance between a doctor and his patients . . . (Doctor Bernard). (p. 167)

Physicians also noted and understood the potential role reversal that could take place. At times, the traditional physician–patient role was reversed when patients became aware that their physician was possibly more ill (e.g., workload or HIV-infected) than they were, or when they were simply concerned about their physician’s physical and mental well-being.

. . . it felt like the patient was almost trying to comfort me . . . (Doctor Claude). (p. 168)

. . . it was the patient who was taking care of the doctor. As if he thought that the situation was too intense for the doctor (Doctor Denis). (p. 169)

Differences

The themes (identified in the autobiographies that were used to prepare the semi-structured interview grid and to create the initial conceptual taxonomy that was used to organize and analyze data) are almost a mirror image of the themes that emerged from the data analysis of the interviews. These themes highlighted the impact of the emergence of HIV/AIDS; emphasized the uncertainties generated by a multiplication of scientific and medical discoveries/findings; talked about the perceptions physicians held about sexuality, drug use, and HIV/AIDS; and have drawn attention to the way they practiced medicine, going from a physician-centered practice toward a patient-centered practice.

However, the following themes emerged from the data of the study of some Canadian gay HIV/AIDS dedicated physicians’ journeys but did not appear in the physicians’ autobiographies. Under the first category mentioned in the study, the transformation of the physician’s personal and professional identities, the study brought to light the militant implication of these gay physicians as they advocated and lobbied for their HIV/AIDS gay patients. As they recognized themselves as being gay physicians, they reconsidered and altered their involvement in their patients’ medical, political, and social causes/battles (e.g., treatment, medication, and rights). In doing so, they demonstrated their solidarity to the gay community. To strengthen their ties with their community, they also modified their medical practice by treating their patients in conventional (e.g., private clinics, community health centers, and hospitals) and unconventional work environments, namely, in their patients’ residences/homes.

The study also underlines that during the pandemic, these gay physicians recognized that pharmaceutical companies had acquired a more open attitude regarding their participation in research protocols. Thereafter, a paradigm shift took place: from medical professionals they became professional-practitioner researchers. They became committed to the development of professional knowledge related to medications (drugs) and treatments.

Finally, as they were constantly confronted with a fatal disease, they recognized that there might be a place and a time where euthanasia would be appropriate, even though it was still illegal at the time.

Under the second category mentioned in the study, the transformation of the physician–patient relationship, as well as the professional, pharmaceutical and community networks, the study brought to light how gay HIV/AIDS dedicated physicians made more place for discussion about the HIV/AIDS patients’ lifestyle (e.g., sexuality, homosexuality, cruising, raves, drugs, and saunas). They also modified their therapeutic conversations by being less paternalistic, refraining from blaming patients for what happened to them, and by not discriminating and stigmatizing their patients. While doing so, they also blurred the traditional border that existed between themselves and their patients, such as by going to their patients’ funerals. They built networks of professionals who were sympathetic to their causes/battles and developed links with social movements to increase the support networks for their patients. They became directly involved in gay community organizations against HIV/AIDS and learned to play an active role as openly gay informants and activists to disseminate information about HIV/AIDS.

The results from the study, unlike the physician’s autobiographies, make no mention of the role spirituality or religion played while patients were facing a life-threatening and limiting infection such as HIV/AIDS, neither did it mention the reflections patients and physicians provided in relation to it. Yet, the place of spirituality and religion in the lives of patients facing a life-threatening and limiting infection such as HIV/AIDS and their physicians is often mentioned in the autobiographies examined for the study (e.g., Baxter, 1997; Boulanger & Thomas, 2008; Scannell, 1999; Verghese, 1985).

Then, one day, tired of seeing my friends and patients who were only 25, 30, 35 years old die one after the other from AIDS, I questioned my faith and felt anger towards God. So, I looked at the sky and, whether God exists or not, I spoke to him that day. I asked him, “Why is this happening? Why is everyone I love dying? If you existed, you would not be doing this. It’s too unfair.” (Boulanger & Thomas, 2008, pp. 59-60)

New Findings

Through a recent literature review pertaining to gay nurses caring for gay HIV-infected patients, three research papers surfaced about physicians who attempted to treat patients in the context of the pandemic. The first one, by Witt Sherman and Ouellette (2000), is titled Physicians Reflect on Their Lived Experiences in Long-Term Care. The second one, by Murbach (1991), speaks about Médecins et patients au temps du sida: le cas de Montréal; and the third one, by Lévy and Quévillon (2014-2015), addresses the Pratiques professionnelles médicales et VIH/sida: des témoignages à la fiction romanesque. However, they never openly breach the topic from the same specific angle as Jacob’s study, namely, the lived experiences of gay HIV/AIDS dedicated physicians attempting to treat gay HIV/AIDS patients.

Witt Sherman and Ouellette (2000) present the physicians’ reflection on “their professional histories in caring for patients with AIDS” (p. 278). Even though the physicians they interviewed included one gay physician, the data were not segregated using that variable. This research article’s interest resides in the additional information pertaining to the following categories that are described below.

Recurring Themes

Some themes raised by this research article still persist today (recurring themes). Among them are the absence of services to key populations, discrimination and stigmatization, the lack of regulatory framework, and the importance of communication in the physician–patient therapeutic relationship. In 2011, the World Health Organization (WHO) acknowledged that health services to key populations are often not tailored to or integrated into other health and social services, nor do they meet the needs of key populations in terms of their values, desires, or preferences. As well, they do not address their practical constraints.

Further in the report, WHO recognized that structural barriers to health services, such as stigmatization and discrimination, continue to exist and they must be removed to improve the knowledge of “serostatus” in sex workers, men who have sex with men, transgender people, and drug injection users (key populations), while promoting and protecting human rights and promoting access to health services.

In the same report, WHO highlighted that many countries lack a regulatory framework, such as laws, policies, regulations, or interventions to protect human rights, to enable the rapid regulatory approval of new and generic medicines and diagnostics, and to expedite their marketing approval.

Finally, in 2014, a study by Young reminded us of the importance of a physician–patient therapeutic relationship based on communication.

. . . optimal health requires attention to provider-patient communication across the entire HIV care cascade. While care cascade metrics begin with testing and end with viral suppression, healthy aging with HIV requires attention to aspects of health and healthcare communication. (p. 1)

These recurrent themes converge toward one central theme that is the patient’s needs. It is through the patient’s needs that health and social services are recognized and should be improved; that discrimination and stigmatization happen and should be addressed; that human rights are challenged and should be fought; and that communication with physicians occurs and should be evaluated.