5.2 THE CONCEPTUALIZATION OF CORE TERMS: CARING AND TERMINAL
5.2.2 CONCEPTUALIZING TERMINAL ILLNESS
5.2.2.1 Terminal Illness requires long-term care
98 environment that supports and involves the nurses with the necessary resources to care for their patients may contribute in maintaining physical and psychological balance in their lives so that they can in turn continue rendering holistic nursing for the psycho-social well-being of patients affected by a complex illness such as AIDS.
99 With the emergence of effective antiretroviral therapy and palliative medicine there has been much improvement in HIV/AIDS management. The control of viral replication has led to a reduction in the premature death of patients suffering from AIDS (Selwyn 2005; South African National AIDS Council, 2011). Furthermore, it is an established fact that HIV positive patients who have access to treatment, with 90% adherence rate, have improved their quality and duration of life as compared to one or two decades ago (Masur and Bethesda 2009; South African National AIDS Council, 2011). Although all the participants in the current study still referred to their patients as “terminal patients”, the nurses explained that what they meant by this was that there is currently no cure for the disease. Along with the nursing care they provided, the nurses focused on educating their patients on the benefits of antiretroviral treatment, the dangers of not adhering to their treatment regimens and life-style changes. Many of the patients who complied with treatment recovered and their more positive attitudes displayed the hope that their lives had been prolonged, and that the effects of the disease had been transformed from being terminal to being chronic. The nurses’ perceptions of AIDS being a terminal illness was also transformed as they witnessed their critical, dying patients recovering to a chronic and stable state. They did say, however, that in some cases, their efforts to enhance the patients’ self-confidence in their ability to control their symptoms proved unsuccessful and the patients did not comply with their treatment plans and self- management interventions and consequently died fairly early in their course of antiretroviral treatment.
The World Health Organization, (WHO) (2004), highlighted a comprehensive educational package for the successful management of AIDS patients in palliative care contexts. The WHOs strategy includes the following imperative key areas:
100 Special precautions to be considered to prevent infection and
management thereof.
Awareness of the unpredictable course of the illness that can change at any time.
Awareness of the complex family issues that may contribute to non- compliance to treatment, e.g. socio-economic factors and stigma.
Sexuality education for the patients with AIDS.
Adherence to antiretroviral drugs with specific guidelines on the management of specific complications.
While the participants’ interventions focused on curative care in the hospital, with the key focus on antiretroviral adherence, according to the field notes, the bulk of the educational guidelines were neglected. In addition, based on the probes related to patients being discharged from the palliative care wards, no mention was made of educating patients on the prevention of infection or the importance of remaining healthy through safe sex and a healthy life-style. According to McEvoy and Duffy, (2008), fragmentation of health care services prevents the holistic care of patients with AIDS, leading to premature death of patients. Although the participants overlooked certain aspects recommended by the WHO, they did contribute to the well-being of their patients by listening to their problems, giving encouragement and emotional support, and gaining their co-operation and compliance to antiretroviral treatment. Through them, the patients gained confidence in the treatment and were able to be discharged from the palliative care wards for rehabilitation at home. As the nurses witnessed the transition of some patients whose death was inevitable, improving to the extent of being discharged, their perceptions of terminal illness changed from being related to patients who were dying and at the last stage of their
101 lives to patients who could resume their normal lives, sustained through antiretroviral therapy. Thus the conceptualization of terminal illness as requiring long-term care was based on the recovery of terminal patients. The attitudes and physical and psychological well-being of terminal patients were transformed and improved for the better through the nurses’ interventions of caring, and giving hope and emotional support to patients suffering from AIDS.
Kell and Walley, (2009), arguing for the need for palliative care, acknowledge that chronic care is a relatively a new field of health care in most of sub-Saharan Africa and that most facilities have focused on acute and general care rather than special care. The setting of this study was an institution that is registered by the South African Department of Health as a level one district hospital offering general services to in-patient and outpatient services. As noted by the participants, although palliative care services were rendered for patients terminally ill with AIDS, the institution was not equipped to provide chronic palliative care services, particularly in terms of staff- training and equipment, thus impacting negatively on quality patient-outcomes. In spite of these shortcomings, however, the participants made the most of the available resources and gave of themselves in a way that reached out to the terminal patients, to be the eyes of those who could not see, the minds of those who were mentally impaired with AIDS and the feet of those who were bed-ridden, assisting them with their physical needs and providing the necessary nursing care. Those patients who had reached the final stages of the disease were nursed in a way that enabled them to maintain their dignity and die as peaceful as possible (as explained in depth in the next theme on terminal illness requiring care to ensure patients have dignified and peaceful death), while others gained a better quality of life by learning how to take control of their long-term disease.
102 It has been acknowledged that there is a general lack of palliative care despite the recommendations for its essential role in the management of antiretroviral drugs for improving the quality of life for patients with AIDS (Kell and Walley, 2009).
Furthermore, it has been shown that nurses can change the perceptions of patients with AIDS and drastically improve their quality of life, despite organizational limitations, by promoting antiretroviral treatment which is the most effective palliation in HIV/AIDS management (Mngadi, 2006). A study conducted in oncology units by Lange et al, (2008) supports the findings of the current study that patients with AIDS who are diligent in managing their antiretroviral regimen can experience a better quality of life as it confirmed that a significant number of treatments within palliative care contexts can be successful, thus enabling patients to continue living their expected lifespan. In this study, the nurses’ roles in providing dedicated and self- giving care, and the emotional support and hope they gave to patients who had been admitted into the palliative wards in despair, contributed to transforming their lives from being terminal to being chronic, and although requiring long-term care, they could be integrated back into their communities.
5.2.2.2 Terminal Illness requires care to ensure patients have a peaceful and