Good and necessary trouble

Good and necessary trouble

By: Craig Dresang, CEO
June 21, 2023

More than 40 years ago, as an outgrowth of the civil rights movement, the nation’s first hospices played a pivotal role in creating safe and supportive spaces for those in the LGBTQIA+ community.

A lot has changed — for the good — since the earliest hospices bucked traditional thinking and fear-based approaches to care for the first waves of people diagnosed with HIV/AIDS. However, given the nation’s recent and unprecedented increase in legislative assaults against the LGBTQIA+ community, it may be time for the hospice movement to reconnect with its roots and founding spirit.

Our LGBTQIA+ neighbors, friends, co-workers, clinicians, patients, and families are under assault in similar, but different, ways than they were in the 1980s and 90s. The real and relevant struggle of our time is a call to action for hospice leaders to make their voices heard as champions of compassion, respect, and dignity for the 20 million LGBTQIA+ people who call America their home.

Earlier this month, a leading decades-old civil rights organization, the Human Rights Campaign, officially declared a state of emergency for LGBTQIA+ people in the United States. More than 75 anti-LGBTQIA+ bills have been signed into law. This has real-life implications for how, when, where, and if members of our community will access the right healthcare when they need it most.

As hospices were forming and being established in the late 1970s and ’80s, HIV/AIDS was sweeping the nation. The gay community was hit hardest and was quickly becoming decimated. In the beginning, medical professionals were uncertain what caused the disease or how it was spread. For a time, it was believed that AIDS could be contagious like a cold or flu.

This uncertainty prompted many medical personnel to refuse care for fear of being exposed. Other clinicians felt it was necessary to wear protective gear, often referred to as “space suits.” According to Guy Vandenberg, a former nurse who cared for people with AIDS during the 1980s epidemic, “The space suits originally came into existence to protect patients who were severely immunocompromised. However, in many hospitals it got turned around because health-care professionals became so spooked that they wanted to wear them for their own protection.”

At that point in time, all hospices in the country were structured as nonprofit community-grounded organizations squarely focused on the emerging needs of their communities. Embedded into the DNA of these early hospices was an authentic sense of responsibility to care for people in their communities who were dying of AIDS … regardless of any perceived risks or the lack of societal and cultural support.

Hospitals, physicians, and clinicians of every stripe were hesitant and inconsistent in their approaches to extend HIV/AIDS care. A mix of stigma, anxiety and homophobia kept some health care providers away from working with symptomatic patients. For others, the call to care was deep and personal. From 1988 to 1996, thousands of people suffering through the final stages of AIDS were cared for with dignity and compassion by early hospice nurses, physicians, and clinicians.

In the late 1980s, I remember receiving news that a friend of mine, Al Berg, was in Chicago’s Rush University Medical Center dying of AIDS. Many of his friends, and some of his own family, would not go see him in the hospital because they were afraid that they might contract the disease. Others who were close to Al did not want anyone to know that he was gay or that they were associated with someone who was. However, I was determined to face my own fears and go see him.

When I entered the fifth floor of the hospital – in an old, outdated, and abandoned section of the building — there were bright-orange signs on every wall warning staff and visitors of the dangers that lurked in this makeshift AIDS ward.  Streams of yellow and neon green biohazard and quarantine tape lined every doorway.  Biohazard bags were everywhere.  Food trays were being shoved into rooms and everything was covered in plastic. Clinicians were fully gowned as they popped in and out of rooms to talk with patients.

Before I entered Al’s room, hospital personnel required me to fully don with personal protective equipment. It freaked me out, but I complied and put on a bright white one-piece suit over my clothes along with slippers, gloves, and a face shield.

Once I was sufficiently wrapped tight like a package of hamburger in the grocery store, I entered the room. Al was lying in his bed and appeared semiconscious. His mom and dad, wearing no PPE at all, were sitting together at his side. His dad’s arm was resting on the bed rail and he was holding Al’s hand. His mom was gently stroking his arm, back and forth, skin on skin.

When I sat down on Al’s other side, the hospice nurse quietly whispered in my ear, “Honey, you can take off all that garb and hold Al’s hand. You’ll be OK. Really. He knows you’re here and will be happy to hear a friend’s voice.” Hesitantly, I removed my gloves and face shield, put my hand on Al’s hand, and began to share one of my favorite memories with him. It did not take long for Al to turn toward me and smile. His eyes told me that he especially appreciated the sense of touch. Al’s whole energy shifted and there was a lightness in the room. In that moment I understood the power and therapeutic value of touch, and of making yourself vulnerable to another powerless human being.

Like the nurse who cared for my friend Al in Chicago, some of the first clinicians at YoloCares (then Yolo Hospice) also decided to take an alternative approach by embracing the power of touch. They removed gloves and other protective gear so that patients with AIDS could experience meaningful human contact. This practice quickly became normal. Collectively, these courageous nurses challenged the status quo and helped health systems to redirect their energies from curing patients to caring for individual people. This compassionate patient-centered model informed many of the team-based approaches to care that still exist today.

Even though the AIDS crisis brought out the worst in some people, it inspired the best in others. That was certainly true at YoloCares where nurses took the lead to change how patients with HIV/AIDS were cared for. When someone with a severely compromised immune system — usually a gay man — showed up in a hospital emergency room, a common first reaction was to isolate and shun them. The unfortunate reality was that a patient’s sexual orientation often factored into how they were treated. The nurses at YoloCares decided to change that.

Today, the challenges are different, but the same. How we care is as important as how we challenge voices of fear and separatism, how we embrace goodness and equality, how we vote, and what we choose to tolerate or accept. When Martin Luther King Jr. spoke at the March on Washington, he reminded a divided nation that we need one another, and that we are stronger when we march forward together. He said, “We are confronted with the fierce urgency of now. In this unfolding conundrum of life and history, there is such a thing as being too late. This is no time for apathy or complacency. This is a time for vigorous and positive action.”

Indeed, it is time for hospice leaders and their communities to act up and act like a movement again. That might mean being more vocal, writing letters, calling for meetings with lawmakers, donating more to civil rights causes, or as the late Congressman John Lewis said, “Getting in good and necessary trouble.” Our predecessors did it more than 40 years ago to give Americans a voice in how and where they would spend their final days. Now, we need to do it again to ensure our shared values of respect, compassion, and dignity are applied equally across America’s LGBTQIA+ communities.