The medical elements may include
2.8 HIV And Palliative Care
In South Africa the policies of the Department of Health promotes the provision of palliative care services in communities. O'Neill and Selwyn et al (2003: 1) agree that the principles of palliative care can effectively be integrated into the delivery of care and services to people living with HIV/AIDS, throughout the continuum of illness. Neil and Selwyn et al (2003: 1) further state that palliative care is complementary care, not alternate care, which means that providers should focus their attention on comfort, relief of suffering, and quality of life throughout the course of the HIV disease.
It should not be provided only when disease-directed therapy fails or is unavailable. It is a mistake to adopt a palliative perspective and approach only at the last stages of illness. This thinking is in line with the treatment and care model discussed earlier. Caregivers should thus focus their attention on comfort, relief of suffering and quality of life throughout the course of the HIV disease.
In the early years of the AIDS pandemic, clinicians were compelled to learn about palliative care, as there was no cure for the disease. With the advent of antiretroviral therapy and the ability to control HIV disease, it remains important to incorporate relevant aspects of palliative care in the comprehensive management of patients with AIDS. Rather than being
"either-or', curative and palliative approaches to HIV care need to be
"both-and", and one paradigm need never fUlly substitute for the other (O'Neill, Selwyn et ai, 2003:5).
2.8.1 Palliative Care and The Challenge Posed By HIV and AIDS
Although palliative care has been extended to people with HIV/AIDS there are specific challenges because of its specific dimensions. According to UNAIDS (2000:3-4) some of these challenges are:
• The Complex Disease Process
In providing treatment and care services to patients with HIV and AIDS, it is important for caregivers to understand that this disease is far more complex than the palliative care services that has historically been
provided to cancer patients. The course of HIV and AIDS is highly variable and unpredictable, with a wide range of potential complications, rates of progression, and survival. Some patients remain free of symptoms for a long time; others experience alternating periods of increasing dependency with episodes of acute illness, or suffer frequent non-life threatening
complications throughout their infection. Patients also vary in their
emotional responses to the infection; this again complicates the planning and delivery of palliative care.
The roller-coaster nature of HIV and AIDS thus poses a real challenge to the provision of palliative care services to patients who are ill with the
• Complex Treatment
A wide range of treatment for HIV/AIDS patients is now available.
Palliative care in HIV must be able to adapt to the fluctuating yet ultimately downward course of HIV disease. Whilst adherence to medication
stabilizes the course of the disease, other factors can be equally important in optimizing clinical outcomes.
According to O'Neill and Selwyn et al (2003:2) these factors include a wide range of hard- to- control socio-economic as well as personal
characteristics: an understanding of the disease process; empowerment in relation to personal health; a safe place to live; freedom from pain and distressing symptoms; adequate nutrition; treatment for substance abuse;
depression and other mental illness; hope; adequate help of friends, family and other caregivers, especially when functional status is diminished and disease progression is ongoing, These challenges can be met
successfully by using a palliative care framework to approach the patient, caregivers, family, loved ones, and the health care system.
• Stigmatization and Discrimination
People living with HIV and AIDS face a very specific set of psychosocial problems. People are reluctant to be open about their HIV status because of the fear of stigmatization and discrimination, thus increasing their feeling of isolation. Caregivers may also be wary of revealing the positive status of a sick relative. A lot of the time people with HIV are from
marginalized or minority groups, such as drug users, prisoners,
homosexuals, or sex workers. They may have less established support networks, and thus face added discrimination.
The fear of stigmatization and discrimination provides a real challenge to providing palliative care to prisoners who are terminally ill with HIV and AIDS in prison.
• Complex Family Issues
HIV and AIDS has a major effect on families, especially in areas of high prevalence and where most patients are young and economically active.
Both partners in a relationship may be infected. If one partner is infected, the other will worry and may even be angry. If a child is infected, usually both parents are infected as well. Siblings may also be infected. Financial problems are experienced when the breadwinner becomes ill. With regard to offenders who are ill with HIV and AIDS, the burden on the family is increased. Family members have to visit these patients in prison, which is a further drain on their financial resources. They have to provide emotional support to the patient as well, and may also experience some of the
frustrations of the bureaucratic prison environment that provides a challenge to an effective treatment and care programme.
• The Burden On Health Care Workers
Caregivers who provide treatment and care services to patients with HIV and AIDS face conditions unique to the disease. In this study this situation was aggravated by the fact that the HIV and AIDS patients are in prison, which is an institutionalized setting with a specific culture. So many patients are young and health care workers caring for people with late stage HIV disease face the death of all of their patients.
In a prison setting health care workers are compelled to attend to large numbers of patients with varying ailments, in addition to those with HIV and AIDS. Eventually, workers may become withdrawn and fatigued by multiple losses and the complex care needs of their patients. In palliative care, the mental health of health workers is vital if they are to remain empathic and effective in the direction and delivery of care (UNAIDS, 2000:3-4).