From Concepts to Reality
A Consumer’s Perspectives on Palliative Care
I want to begin by describing a particular case—my own. On October 18, 1994, exactly 1 month after my partner’s death, I was diagnosed with HIV. Although I was a nursing student, I did not understand what was happening to me. The only thing I could think about was the suffering I would endure as I grew helpless and approached death.
It was soon after my diagnosis that I decided to become more directly involved with the care of people who were close to death from AIDS. The first person I cared for was a 28-year-old man from a rural area who had been rejected by his family because of his sexual orientation and, even more so, because of his HIV diagnosis. He came to Hogar de Paso, where I was the director, to spend his final days. Disabled due to cerebral toxoplasmosis, he was angry because he felt that AIDS had destroyed his dream to better himself. To this young man’s doctor, the only thing that mattered was the physical pain, so he was prescribed painkillers, an antibiotic for a urinary tract infection, and a diet that forbade certain foods. He was never asked about his likes and dislikes. On the day of his death, he asked for a breakfast particular to Columbia: hot chocolate, eggs, and bread. Of course, this food was contraindicated. When his doctor arrived, he became angry because the patient was not following his recommendations. My only response was to ask if he would allow me to give the patient this meal, if doing so would prolong the patient’s life and make him happy. The doctor answered with a definitive no. I asked him why we could not let the patient be happy, since it could be his last breakfast. As it happened, he died later in the day.
Prior to the death of this person, a 31-year-old man in a very different situation arrived at Hogar de Paso. His mother, an elderly woman, needed us to help her care for him because she had to leave very early in the morning for work and returned late in the evening. The local hospital said that they could do nothing for him because he only had a few days to live. He arrived at Hogar de Paso one night in an advanced state of malnutrition and could not eat or walk. The next day, I tried to feed him some chicken broth. He told me in a broken voice that he could not eat and would prefer to be fed intravenously. I asked him to open his mouth; his tongue and throat were covered with oral candidiasis. We provided treatment, and after a period of time he began to eat again. Even though his doctor had said it would just be a few days, he lived for much longer than that.
On July 17, 1996, exactly 8 days prior to my 25th birthday, I was in my office as usual, but with a headache that I had had for 3 days. It did not respond to any type of painkiller, and the earliest available appointment with my doctor was in 2 weeks’ time. The pain worsened, and I suddenly fell unconscious. When I returned to consciousness, my concept of life had changed. My colleagues had called my older sister, who had always supported me. She was there by my side, but I did not realize what had happened to me; I did not understand her tears, let alone those of my colleagues. The most difficult thing to understand was that they did not respond to my questions because they could not hear me, and the most painful thing was that I could not feel the right side of my body. My sister, crying, told me that everything would be fine, that she would not abandon me and would take care of me.
Hours later, my colleagues contacted a friend who is a medical doctor and is, ironically, part of the medical team at a clinic that specializes in palliative care. He gave pain killers because, following the protocol, the terminal stage had begun and he could do nothing but help to ease the pain. Fortunately, the next day my doctor was contacted and was able to examine me. He ordered a CAT scan of my brain, which confirmed that cerebral toxoplasmosis had given me right lateral hemiplegia, leaving me paralyzed for about 3 months. My doctor checked how much of my brain had been affected because, according to him, he could not do anything but slow the process, as I had already entered into the terminal stage. My family decided to take me home so that I would not be alone when I died.
In many situations, people living with HIV/AIDS are abandoned by their families, but in mine my family acted as a protector. It is very important that family members assume a support role and simultaneously allow their loved one to exercise his or her ability to function as a rational person and make decisions.
My case and those of the two men described above illustrate how people living with HIV/AIDS are seeking not just pain relief but also improvement in the quality of their lives. To help people living with HIV disease meet this goal, we must do a better job of providing information and life skills. We must also ensure that people can access services that help maximize the family’s ability to support their loved ones living with HIV disease.
Many initiatives are being implemented to provide better living conditions to those who are living with HIV/AIDS. However, we still need to create a better awareness that, despite an HIV/AIDS diagnosis, every life is worth living. We also need to create an environment for greater self-determination. Finally, we must all remember that our dreams end only when we die, not before. And until death comes, there is much that we can offer to people living with HIV disease, even to those confined to a bed.
