Hospice trailblazer in Atlanta cared for dying AIDS patients

By Katy Roberts

For more than 25 years, Metta Johnson has cared for terminally ill individuals, including HIV/AIDS patients at Atlanta’s first inpatient hospice facility.

In 1991, Johnson, a certified care manager, along with her husband, Clyde, and a nursing colleague opened Haven House in Midtown. Prior to that, the Georgia State University School of Nursing graduate worked in oncology at Atlanta Medical Center.

She now owns Metta Johnson & Associates, a Decatur-based comprehensive care management agency that helps individuals and their families with aging and care issues. Johnson discussed caring for HIV/AIDS patients in hospice and what it takes to work in those types of settings.

Q: How did you come to work with AIDS patients?

A: When I worked in oncology, some of the patients we treated had AIDS because AIDS patients can get two types of cancers, Kaposi’s sarcoma and lymphoma, that are treated with radiation therapy. It was a time where if diagnosed with HIV, many doctors told the patient that they did not want to see them again; or if your employer found out that you were HIV positive, much less have AIDS, then you would be immediately fired. This is what piqued my interest to help such a shunned part of the population.

Q: So what did you do?

A: In 1991, a nursing colleague of mine, Kathy Middleton, and I realized that people with AIDS were staying in the hospital for months getting PPN, which is partial parenteral nutrition, along with IV antibiotics and blood transfusions. They did not have the support system at home to be able to receive that treatment at home. We wanted to create an inpatient healthcare setting to provide 24-hour professional care for people with AIDS, as well as, provide the emotional and psycho-social support that they need and deserve. So, we made a proposal to Georgia’s Department of Human Resources to receive a waiver under the hospice licensure and we opened Haven House at Midtown on Dec. 26, 1991.

Q: There was a lot of animosity around AIDS in the early ’90s. Did you face any opposition when you started Haven House?

A: Oh yes, we were on an Oprah show called, “Not in my Backyard.” It was about group homes for people with different types of special needs, where people would say, “We know we need it, but we don’t want it in our backyard.” We had trouble getting our garbage picked up. We, of course, had biomedical waste and we had to convince the garbage service that it was safe to handle. We were even sued before we opened.

Q: What is it like interacting with dying people everyday? It sounds like an emotionally difficult task.

A: When people have life-threatening illnesses, the masks come down and they are very real. They don’t have time to fake it anymore. If you are not there, they are not going to have the support. It’s hard but it’s enormously rewarding. You are able to impart care and love to them, but also, they give it back to you because they are so appreciative.

Q: Tell me about one of your most memorable experiences with an AIDS patient.

A: I remember one patient who had AIDS and was gay. His father was a minister in south Georgia and had disowned the son when he came out to the family. We felt like the father at least needed the opportunity to tell his son goodbye and vice versa. The father came up with his second wife and the first couple of days he would not even go in the room. He sat in the hall. Then he eventually was able to go in the room and hold his son’s hand and cry and tell him he loved him. It was very touching and a part of what our mission was at Haven House.

Q: How long did patients usually stay at Haven House?

A: When we started Haven House, from diagnosis to death, was 18 months. But actually, about 30 percent of our patients got better and were able to go home, which demonstrates not only what nursing can provide but also nutritional support. I remember one patient who was able to go back home and on Christmas Eve, I was watching the Atlanta Symphony Orchestra and an African-American choir. I looked up and I saw this patient singing in the choir. I was so grateful that we were able to provide that care for him to be able to go home and live his life. He later came back to us and died at Haven House.

Q: What types of skills and qualities are required to be a nurse in a hospice setting?

A: I think that you have to have a thorough medical knowledge of all bodily systems because many terminal illnesses, such as AIDS and cancer, affect all of the body systems. You have to have good interpersonal skills and a good understanding of the psychological life and death processes at different ages. Most importantly, you have to have a passion for what you do.

Q: How has the social and medical attitude toward AIDS changed throughout the years?

A: Part of what we tried to do was educate the community at large about AIDS and how it’s transmitted. Back in the late ’80s and early ’90s at large healthcare centers, if you had AIDS you were put in a different waiting room so you would not interface with the other people who go there. There was a lot of prejudice, a lot of separation. I think that we have grown past that now, to a certain extent. I doubt that people with AIDS go around talking about it as if they had high blood pressure. I still think that there is shame and fear.

Since the mid-’90s, however, AIDS has been defined as a chronic illness, so people can live 17 to 20 years with the disease. Great strides have been made in medical care but there still is no cure yet. The side effects of the medicines are very difficult to tolerate. Just because it is a chronic illness does not mean it is an easy life.

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