By Dr. Ellen Fink-Samnick DBH, MSW, LCSW, ACSW, CCM, CCTP, CRP, FCM
The First of Many
I arrived on the unit for morning rounds no sooner than one of the physicians approached me. “Just a heads up, Ellen. Be careful if you visit room 232.”
“If? Careful?” What do you mean, Dr. P? I asked.
Dr. P. continued, “L was admitted through the ED last night. He has multiple dark purple lesions on his chest and arms. He’s alert and oriented, though weak from a 30 lb. weight loss in the past few months. He’s scared to death but won’t share why. Bloodwork is pending, but I’m pretty sure we’re looking at ‘Gay Cancer.’ L denied being Gay, but how else could he get this thing?”
My colleague grabbed the patient’s medical record and wrote “presumptive Human Immunodeficiency Virus (HIV), r/o opportunistic infection of Kaposi’s Sarcoma associated with Acquired Immune Deficiency Syndrome (AIDS)”. I immediately sensed his powerlessness and the raw, visceral emotion recognizable to anyone who worked in a hospital from 1981 onward. Dr. P’s desire to diagnose and cure L was accompanied by a unique presentation, one I witnessed and experienced daily. It was a balancing act of unconditional caring and emotional investment amid profound caution for self-protection from contamination and ultimate death. This caring amid caution conundrum became an occupational hazard for the workforce.
Ethical Issues Escalate
The staff mobilized within seconds of the physician’s order for “universal isolation precautions.” Cartons of gowns, gloves, and masks were stacked outside of the patient’s room and often blocked entry and exit. Large signs on neon-colored paper identified the patient’s infection precautions and were taped to the door and medical record. In these pre-HIPAA days, patient privacy and confidentiality were minor considerations. Word spread quickly among the staff, other patients, and visitors to avoid room 232.
Refusal of care ran amuck. The phlebotomy team refused to draw blood for labs, leaving this action to a fresh crop of residents and medical students. Needlestick injuries were common. I was frequently paged to provide counseling and support to an anxious clinician. Housekeeping only picked up trash from L’s room when it was placed in the hallway—dietary left meal trays on the floor outside the room. Nursing was attentive, yet many staff asked to be reassigned, particularly those who were pregnant or had children.
The AIDs epidemic shifted the professional ethical landscape. Before this time, ethical concerns were often left to physician discretion and limited to whether to treat terminal and life-threatening illnesses. There might be experimental treatment or organ transplant considerations. Patient stigma and staff refusal to render care meant moral dilemmas. The workforce heeded extreme caution when treating patients across every touchpoint of care, from physician offices, emergency departments, and acute facilities. Nursing homes and home health agencies readily refused patients for admission. The seminal ethical principles of autonomy, beneficence, fidelity, justice, and nonmaleficence took on new meaning, and across every profession.
Meanwhile, on the Front Lines
New language was rapidly being added to my growing medical vocabulary. L was wasting, cachectic, and had oral thrush. He was too weak to get out of bed on his own. It took almost a week for his HIV+ status to be confirmed and another week for the CDC to validate the presumptive diagnosis of Kaposi’s Sarcoma. A team from the CDC appeared at the hospital within hours of that diagnosis to provide mandatory staff education on managing patients with HIV and AIDs. Much of my time was spent allaying staff fears around their potential for infection from the most basic patient interactions.
I was gowned and garbed to the max my first time entering room 232. However, intuition found me quickly removing my mask. L needed human emotion, which meant seeing my face. I sat in the chair next to his bed, which allowed me to talk with L rather than peer down at him from a more distant, standing position. I sensed his desperation and fear on multiple levels: disclosing his sexual orientation and HIV+ status to friends and family, knowing his diagnosis meant certain death, and dying sick, disfigured, and alone. In those early days of the epidemic, patients died quickly from the virus or one of the opportunistic infections associated with it. L was no exception, dying within weeks of his formal diagnosis. Like many individuals, he languished alone in his hospital isolation room with few visitors beyond the dedicated staff who tended to him. Peers who knew L’s truth were too scared to visit and face what could easily be their own illness course and mortality.
World AIDS Day 1988 and the Constant Conundrum
The first World AIDS Day fell on December 1, 1988, and over 5 years after I first met L. I was now Coordinator of AIDS Services at Queens Hospital Center in Jamaica, New York. The hospital was among the largest providers of inpatient and outpatient services to patients and their families infected with HIV in the Northeastern US.
Thousands of patients crossed my radar. Some were men who identified as homosexual, but many were heterosexual, bisexual, and transgender men and women infected by spouses and partners. There were parents infected while caring for their adult children. We saw a growing generation of babies born HIV+. There were countless persons who used intravenous drugs and infected by sharing needles with other users. I met patients whose diagnosis came following surgeries or other treatments for which they received blood transfusions. There was an endless flow of faces and stories for persons who ranged from newborn to 80 years of age. The virus subsequently invaded my personal village, taking close friends and family. Yet, amid my primary ethical obligation to care for patients, their family members, or other caregiver remained paramount.
The tedious balance of caring amid caution remains a reality that can’t be avoided, especially with any new public health crisis. The industry witnessed this dynamic again in 2020 with the SARS-CoV-2 virus and Coronavirus pandemic. There may be little escape from the ethical trials, emotional rigor, and natural worries of coping with new disease states and conditions. Yet, the workforce can stay vigilant to safeguard against them.
Proactive learning of the facts helps minimize reactive response. In addition, it remains vital to monitor professional boundaries and always Take 10:
- 10 seconds to stop and breathe
- 10 minutes for a more intentional break
- 10 hours for a day off
- 10 days for a vacation
If you need 10 weeks or 10 months off that’s a different chat, and potentially a new job.
HIV Prevention and AIDS Remain Global Priorities
It is 36 years since that first Worlds AIDS Day, and I think of L often. I also reflect on the 42.3 million persons known to have died of the virus since 1981 and 85.6 million who have been infected (WHO, 2024). The United Nations (UN) AIDS Global AIDS Report (2024) identifies upwards of 44.6 million people currently living with HIV around the world; 1.7 million people are newly infected with the virus annually. Close to 820 000 people died from AIDS-related illnesses in 2023 alone (UNAIDS, 2024).
While AIDS no longer means a death sentence, pre-emptive attention to the virus remains the mandate. Lifestyle management, preventative medications, and necessary treatments are vital to successful public health outcomes. Persons infected by the virus are seldom viewed as victims. Instead, patient-inclusive language now refers to persons living with HIV, whether PLHIV or PLWH, or persons living with AIDS (PLWA).
Along with other reports embedded though this section, the CDC publishes a World AIDS Day Toolkit and other useful resources for practitioners. Further information and resources are available from the National AIDS Trust on their World AIDS DAY 2024 website
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Bio: Dr. Ellen Fink-Samnick is an award-winning industry entrepreneur whose focus is on professional case management, interprofessional ethics, health equity, quality, and trauma-informed leadership. She is a content-developer, professional speaker, author, and educator with academic appointments at Cummings Graduate Institute of Behavioral Health Studies and George Mason University’s School of Public Health. Dr. Fink-Samnick serves in national leadership and consultant roles across the industry, and is the current Vice-Chair of CMSA’s DEIB Core Committee