In light of the recent XV International Aids Conference in Bangkok, think about the individuals behind the horrifying statistics. The reality is that many people continue to die from Aids-related illnesses — alone and often in pain.
While most of the efforts in the fight against HIV/Aids seem to focus on education, prevention and provision of anti-retrovirals, the treatment of patients at the end of their lives is often forgotten.
Palliative care is a branch of medicine that looks after people who cannot be cured, by focusing on symptom and pain relief. Yet many health-care professionals are not trained to provide adequate palliative care, says Dr Natalya Dinat, of the perinatal HIV research unit at Chris Hani Baragwanath hospital.
“Doctors and nurses have been taught to cure, but obviously they can’t cure everybody so they tend to shy away from the people they can’t cure,” says Dinat, “they see it as a failure.” This often results in the attitude that “nothing more can be done” for terminally ill people — a mindset that Dinat and her colleagues are fighting to change.
“Fifteen-thousand people died in Soweto last year from Aids, and only a tiny minority of these people had pain and symptom relief. Yet by using basic medicines listed on the Department of Health’s essential drug list at the primary health-care level the patient can enjoy a pain-free life and a dignified death,” says Dinat.
Dinat believes there is too much stigma attached to palliative care and the drugs used for pain relief, such as morphine. “There are a lot of myths about morphine among nurses and doctors, so it is often withheld from patients, when in reality it is not a dangerous drug,” says Dinat.
Many patients suffer terrible pain and unpleasant physical symptoms that exacerbate the social and spiritual pain they are going through, as they are often rejected by family members. Dinat says more than 80% of people dying from Aids-related illnesses suffer from more than three types of pain, so managing pain relief can be extremely complex and health workers need to be trained to deal with the many forms it can take. Â
Dinat recalls a case in which a woman aged 27 was suffering from Karposi’s sarcoma, an Aids-related cancer. The cancer had caused her leg to become so badly infected that the odour could be smelt from outside the home. The patient’s family refused to go into her room because of the smell, and this increased her feelings of social isolation. Nurses from the perinatal care unit were able to treat the infection using basic drugs and, thereby, allowing the patient to spend time with her family without feeling she had lost her dignity. The unit also arranged for a counsellor to visit her and offer support.
Similarly, up to a quarter of patients with late-stage Aids suffer from cytomegalovirus retinitis, a disease that will blind them for the last months of their lives if left untreated. this disease can be easily treated using an implant, yet many doctors feel the implants are too expensive to use on patients “who are going to die anyway”. But, as Dinat points out, it can be terrifying for people who are dying and in pain to lose their sight, and not be able to see their loved ones at the end.
Dinat believes that many doctors and nurses have not been trained in managing Aids properly, often because of heavy workloads and a lack of time and money to attend training courses.
To combat these shortfalls the perinatal HIV research unit has formed a partnership with Free-Learning, an organisation dedicated to the advancement of e-education in the fight against HIV/Aids. The partnership has developed a new e-learning module — An Introduction to Palliative Care in Aids and Cancers.
“End-of-life care has fallen by the wayside of the research agenda; we are looking to combat this with products like these,” says Dinat.
Programme developer Craig Meltzer says the programme uses simulations and interactive games to teach learners to recognise symptoms, and work out drug dosages for effective treatment. Animations and graphics feature strongly and the module caters for differing levels of computer literacy.
The programme also simulates ethical dilemmas that the health-care professionals may encounter, such as how to deal with a patient who refuses to inform his or her partner of their HIV status.
This programme is freely available and was developed to run on the most basic of computers.
Dinat used the module to conduct a skills-building workshop where health-care workers from around the world shared their experiences of end-of-life care at the Bangkok conference.
For more information on the module visit www.free-learning.org