A Positive Force
A Hospice Nurse Since the Early Years of AIDS, Nancy Auster Proclaims That The Epidemic Has Made Her A Better Person
by Dann Dulin
Nancy Auster, RN, has been on the frontlines of the AIDS battlefield since the early years of the pandemic.
In 1991, Nancy joined the VITAS (pronounced VEE-tahs) team in Miami, the pioneer and leader in the American hospice movement. Established in 1978, VITAS operates forty-seven programs in fourteen states and employs 12,176 professionals. As an Outreach Healthcare Admissions Nurse, she serviced patients with end-stage AIDS, connecting them to necessary services, and educating patients and their families about hospice care.
At the time, VITAS was the only organization with a specialized team approach to AIDS care. Nurse Nancy is still there today, after twenty-eight years——her age when she joined VITAS!
A Connecticut native, Nancy served eight years as an Air Force medic. After leaving the military, she earned a nursing degree from the University of Miami. From there she was hired by Miami Mercy Hospital’s AIDS unit, working on an immunology floor, treating patients from the onset of the disease to the final end stages. The work ignited her passion for hospice care.
In the early nineties, while working at VITAS, Nancy was also active with health fairs, AIDS marches, walks, and rallies. She has been connected with People With AIDS Coalition, The Health Crisis Network, South Florida AIDS Network, and the Ryan White Foundation. She continues to educate healthcare professionals on the significance of hospice for PWAs.
Today, Nancy still remains an activist. She recently participated in Pride Parade and AIDS walks, and has established “LGBTQ Awareness for the Elderly Living in Long Term Care,” an in-service for healthcare workers. Nancy is a North Miami resident and has a daughter, sixteen, and a son, twenty-four. She lives with three cats, all named after their colors: Blackie, Gray-Gray, and Brownie!
Dann Dulin: Nancy, who was your inspiration to become a nurse?
Nancy Auster: My mom. When I was a little girl and throughout my childhood, she was an EMT [emergency medical technician]. She’d share her experiences with me, and I found it intriguing. One time, there was a motor vehicle accident in front of our house. She ran out and I ran out behind her, and she yelled, “Get my first aid kit!” I remember thinking to myself, “Wow, I have something to do.” I was literally running barefoot over rocks and pebbles to the car for her first aid kit. I then watched as my mom took care of this injured person. I knew right there that that was what I wanted to do! [Nancy’s mother, Erleen Mercurio, died in 2016.]
When did you first hear about the epidemic?
When I was in the Air Force as a medic from 1981–1989, I cared for military patients who had a disease that couldn’t be named but usually led them to be discharged from the military. I found out after I left the military that it was called GRID—gay-related immunodeficiency disease. That’s what they were calling it then. It was marked by the same symptoms, weight loss, fevers, rapid diarrhea that wouldn’t stop, and strange infections. The military didn’t know how to take care of these people, and I too was oblivious back then. I was twenty and didn’t realize what was happening until I left the military.
What were your thoughts early on about working with people who were living with AIDS and were your patients?
I was a young nurse in 1991 and at the dead-center of the AIDS crisis. I was watching my age group experience this horrible disease, not being able to offer any kind of treatment, not understanding why our government was looking the other way, and I started to get a little scared for myself. These were my peers; this was my age group.
[She ponders.] It was quite a time as a young nurse. There were lots of questions on my mind. What’s going on here? Why is there no research? Why are there no programs for AIDS like there are for other diseases?
As a young nurse you worked in a hospital on the Immunology floor and occasionally would work in their hospice unit. What was your experience during those times?
I would see the patients from the immunology floor undergoing full-on medication intervention then be transferred to the hospice floor, where the emphasis shifted to total comfort care. That transition really intrigued me. On the hospice floor, I was hearing people laughing and just being comfortable—something that didn’t happen on the immunology floor. The mood on the hospice floor was much more comforting and it really was the impetus for my career change.
Very interesting observation….
There’s a famous picture of an intensive-care unit room, with all kinds of machines and lines and tubes and technology, and somewhere in that bed is a patient. You can barely see a face, the patient is loaded down with so much stuff. You could die that way, or you could die the hospice way. Hospice care made way more sense as far as end-of-life care. I had heard VITAS Healthcare had fantastic training ….and I became a hospice nurse.
Share one of your journeys while working in hospice.
While I was on the AIDS team, I made a home visit to a house in Miami where the front door was cracked open just a bit. I knocked and said “Hello? It’s Nancy from VITAS.” A voice from inside the house said, “I’m in the bathroom, come on in.” I replied that I would wait, but he insisted, “No, come on in!” I remember opening the door and saying to myself, “Oh, boy, he must really need help.” But what I found was far different. My patient was in the bathtub, taking a bubble bath and getting ready for a drag queen ball. On the sink and counter were his wig, powders, mascara, and his gown. So I proceeded to put the toilet seat down, sat on the toilet, and did his assessment and admission right there.
What a grand story! Let’s hear another one.
I vividly remember a patient who had AIDS-related dementia, which would cause some behavioral problems. This patient needed a private-duty aide, so a company sent us one. Aides are supposed to sit in the room with the patient, making sure they are safe and that their needs are met. The disease and the dementia can make the situation unsafe. But this private-duty aide would dress up with a mask, wear several pairs of gloves, two gowns——one covering her back, one covering her front. She wore shoe coverings and goggles and sat outside the room. If the patient called and needed help, the aide would ask us to go into the room with her. In the eighties and nineties, healthcare professionals treated patients like that sometimes, and oh, man, that made me so mad. That really was a tough pill to swallow.
I remember those days, sad and humiliating for the person with AIDS. What else burnt you up about people’s behaviors in those days?
With so many of my patients, there was such a fear of their family finding out not only that they were gay, but also that they were dying of AIDS. This was before advance directives became law after passage of the Patient Self-Determination Act of 1990. There wasn’t a big drive back then for patients to put their wishes in writing and designate someone to make decisions for them. I’m guessing that nine out of ten of my patients and their partners did not have advance directives.
Can you elaborate on this?
Yes, if a patient’s partner told me that they were a family member or next of kin, I wouldn’t challenge them. They would be the decision-maker and sign the papers. Then later on, here would come the patient’s parents, and massive chaos would often ensue. They would challenge each other, and I would have to watch as this partner of five, ten, or twenty-five years would just sink back, helplessly, and allow the parents to take over and reverse everything the two partners had talked about and decided. They’d been by each other’s side every step of the way, but the parents who had basically evicted their child out of the household years earlier would step in and take over. That was hard to watch, and it happened over and over again.
Majorly disturbing. What are some of the things you have learned in hospice work over these twenty-eight years?
First, never say never. Things that were never done in hospice are now a possibility at VITAS, such as complex therapies for seriously ill patients. We now offer services such as IV medication to advanced heart disease patients who are on hospice care, not to treat the underlying disease but to control heart disease symptoms and provide comfort as they reach the end of life. Previously, that was a big no-no. Now, we accept patients on life-support for gradual weaning off the ventilator, and that’s something we never did before.
Second, I learned to always be on the side of the patient, and if they don’t want hospice care, that should be okay.
Third, if they ask for something that’s not normal or unusual, I ask myself how can I figure out how to get it for them? The classic company example is Esther Colliflower, one of the cofounders of VITAS, and the “midnight milkshake run.” A patient back in our early days had a craving for a milkshake, but it was after midnight and there was no place open to get a milkshake. But Esther made sure we got that milkshake and honored the patient’s wish!
Do you attend to patients with AIDS today? I mean it certainly has dwindled since the early nineties….
The number of AIDS patients we care for has really dropped. At the peak of the crisis in 1994, our daily patient census at VITAS for AIDS was about 275 at any given time. Today, AIDS patients are few and far between.
How did/do you deal with this sad, demanding, emotionally charged work?
Those four words——sad, demanding and emotionally charged——are excellent and accurate descriptions of this work. Not a lot of nurses can do it, and certainly not for as long as I’ve done it. The good thing about VITAS is that all of the teams take care of each other. As a company, VITAS encourages people to take their PTO time. They even have quiet rooms in each office, so when the staff members come from the field into the office, they can use the quiet room to decompress.
The VITAS value that “we take care of each other” is genuinely embraced by everyone who works at VITAS. Yes, we take care of patients and families first, but “we take care of each other” is a very serious commitment by this company. My downtime comes from being with my kids. It’s my therapy.
What has kept you employed with VITAS for so long?
VITAS has been a wonderful company to work for, definitely the only one that pioneered end-stage AIDS care in our community. We support various programs, such as the Children’s Bereavement Center in South Florida, hospice care in homeless shelters, and grief camps for children and families. VITAS also provides unconditional charity care for patients who can’t afford to pay. We are pioneers in end-of-life care, especially for veterans through the We Honor Veterans program.
I see how the local South Florida community looks up to VITAS for information and guidance….doctors, hospitals, referral sources, any healthcare entity, even other hospices will say, “You might want to call VITAS on that one. VITAS can do anything.” I’ve been fortunate to travel to many states for hospice-related work, and I see how VITAS is admired throughout the nation. I’ve been proud to be a part of it all, and I want to continue to be a part of this amazing company.
I want to hear more about the “LGBTQ Awareness for the Elderly Living in Long Term Care” in-service for healthcare workers you established.
A few years ago I was approached by a director of nursing for an assisted living facility (ALF) who had a feeling that there was some bullying going on among the residents and staff toward presumed gay residents. She asked if VITAS had any presentations to address this problem. We didn’t, but I told her I would create one. We covered things like terminology, for example, What does LGBTQ stand for? I addressed some historical facts related to the AIDS crisis, the Stonewall movement in New York, Harvey Milk in San Francisco and other milestones. I covered diseases and how older people may not be “out” about their sexuality, a topic that can still be taboo for an older generation. After I presented my in-service to her staff, the director of nursing noticed fewer problems in her ALF, especially between her staff’s attitude and behavior.Remarkable news! An eminent accomplishment. I hope others adopt this program.
In my opinion, in nursing homes and assisted living facilities, people want to live together and they now have the right to marry. Even today, I always ask residential facilities, “How do you accommodate LGBTQ residents?” “Do you give them a private room?” “If the door is closed, do you train your staff to knock before entering?” Usually, nobody can answer these questions.
If someone wanted to know more about end of life, would you recommend Elisabeth Kübler-Ross’ book, On Death and Dying?
While her book is still a best-seller today, I would recommend watching the documentary or reading Being Mortal by Atul Gawande. When Elisabeth Kübler-Ross published her book on death and dying fifty years ago, hospice was still an unknown. Nobody knew what it meant. Today, everybody knows what hospice is, but now it’s like the big elephant in the room. Being Mortal really breaks down what happens at the end of life through the eyes of a doctor who’s going through these end-of-life conversations and relationships with his own father and his patients. He explains how we all could do a much better job of addressing end-of-life issues. It’s a real story, like the modern, twenty-first-century spin on Kübler-Ross’s On Death and Dying.
What do you believe happens after we die?
I want to believe that there’s an afterlife and reunions with friends and family. I’d like to also believe that we are being watched over by our loved ones who have passed away.
Nice sentiment, Nancy. Any final thoughts about this disease and/or the end of life?
It changed my life. It was the first thing I ever became passionate about. This career helps people to preserve their dignity, making sure everyone is respected and heard.
For more information about VITAS, log on to: www.vitas.com.
Name one of your hobbies.
I like learning historic facts, watching historical shows, or traveling to historical sites.
Where’s the last historical place you visited?
911 Memorial in N.Y.C. in August
What are you binge-watching?
No judging, okay?! Anything on HGTV, Keeping Up with the Kardashians and pretty much all of the Real Housewives series.
What book are currently reading?
It’s called, The Core Curriculum for the Generalist Hospice Nurse. I’m in the process of getting recertified.
Who would play you in the film of your life?
Sarah Jessica Parker. I’m a huge fan of Sex and the City.
How do you deal with depression?
[Nancy takes a big sigh.] Honestly, I’ll probably curl up in a ball under my covers for about a day or two, cry a little. After I go through that, I seem to be able to get up and start moving again.
Are any of your kids following in their mom’s footsteps?
My son went to college to study healthcare administration and was focusing on end-of-life care. But as life would have it, he was sustaining himself financially by working as a bartender, and they promoted him, presenting an amazing opportunity to be a sales representative for a craft beer brewery. He took it! He’s doing very well.
Name your all-time favorite TV sitcom.
My answer was going to be I Love Lucy, but since comedian Tim Conway just passed away, I realized my answer has changed. Now it’s a tie between I Love Lucy and The Carol Burnett Show, with Tim Conway.
How do you have fun?
Dann Dulin is a Senior Editor of A&U.