The palliative care needs of patients with stage 3 and 4 HIV infection
Objective : To investigate the palliative care needs of patients with stage 3 and 4 HIV infection in Settlers Hospital, Grahamstown.
Keywords: Palliative care, HIV, service development
The city of Grahamstown has one state hospital with 272 beds which serves the whole population of the city and the surrounding area. The population is officially 120,758 people, but the actual figures are probably nearer to 180,000 according to a survey performed by the Economics department at Rhodes University which is situated in the town.  Official figures for the prevalence of HIV in the community  are 10.8% giving a population of at least 12,000 people living with HIV in the community. The number of patients in stage 3 and 4 needing medical care has started to impact on the number of hospital admissions and the number of deaths.  Management of these patients has become a major part of the burden of care in the hospital. Palliative care allows the care to be individualized and to focus on the needs of the patients and symptom control. With the impending and actual rollout of antiretroviral ARV treatment, the concept of opening a palliative care unit to help manage the HIV and Cancer patients was mooted. As part of the motivation for opening this ward, a clear understanding of the needs of these patients was needed and this study was undertaken to assess these needs.
It was also important to understand the potential role of palliative care in managing acquired immune deficiency syndrome (AIDS) patients. The literature about AIDS treatment tends to focus on curative intervention rather than symptom control. There is less interest in palliative care in AIDS treatment and this form of care is limited worldwide and impeded by a lack of recognition of the need for it and lack of support systems.  Studies have shown that symptom management, particularly pain management is poor in AIDS patients. ,,
The absence of an extensive body of work showing that palliative care improves the outcome in AIDS treatment encourages the perception that this approach is less relevant.  At the International AIDS Conference in Barcelona in 2002, of the 8719 abstracts accepted, only 53 were about palliative or home-based care, and none were from South Africa.  The introduction of highly active antiretroviral therapy HAART has tended to exacerbate the problem by over-medicalising the treatment.  But as AIDS evolves into a chronic illness, the palliative care needs are likely to increase. 
The majority of work on palliative care comes from the developed world and the palliative care needs of patients in Africa may differ significantly from those in other parts of the world because of poverty, a different approach to family relationships, and the need to stay in the community rather than to die far away.  Sepulvada et al. have shown that the whole issue of the needs of patients has to be reassessed to give population-specific quality care at the end of life and that if this is done, the suffering that accompanies death in Africa can be avoided or relieved. 
In sub-Saharan Africa, the goal has been to provide home-based care for terminal AIDS patients but despite the fact that this policy has been implemented widely, the providers report problems with pain control due to lack of availability of drugs, trained health care providers, stigma on the part of the community who were unhappy with the presence of these patients in their midst due to fear of the disease, and legal restrictions.  In Uganda, palliative care has been implemented using the Hospice organization, but the delivery of services is severely constrained by lack of financial resources. 
In South Africa where there is enormous stigma against those patients dying with AIDS, many of the patients are rejected by their families and have no choice but to die in hospital. The sense of isolation and fear that results from being admitted to hospital may exacerbate the distress experienced by these patients. The attitude of staff to patients with AIDS and the apparent indifference to the suffering of these patients is often in contrast to what might be expected from dying within a loving family. In this context, a recent study conducted by the University of Cape Town has indicated that this apparent indifference may be related to the stress of watching patients die. When the provision of antiretroviral drugs was implemented, the nurses became revitalized and committed to the program.  In particular, the approach to palliative care for AIDS patients in the formal health services is poor due to lack of training and the stigma associated with the diagnosis.  Harries has stated that for there to be any hope of reducing HIV incidence and curbing the morbidity and mortality of the disease, the approach to care must change and include psychosocial support, screening for diseases, clinical care for opportunistic infections, and palliative care among other programs.  Instituting palliative care may be difficult because of resistance on the part of the patient to accept the seriousness of the illness,  the unpredictability of death and the difficulty the clinician has in deciding when the patient has entered the terminal phases of a chronic illness in which episodic major illness alternates with periods of relative wellness. 
The AIDS pandemic has resulted in an enormous burden on the health care services, the communities who have been required to cope with the dying patients and the families that are left behind. Palliative care in combination with, and as a adjunct to home-based care has a potential role to play in improving the medical care, symptom control, and mortality of the disease, the psychosocial issues within the families and the surviving children, supporting the care givers and communities and encouraging future patients to come forward earlier in the disease.
It is, therefore, important to identify palliative care needs among AIDS patients in the African context where the pandemic is overwhelming both the health resources and the communities coping with the burden of disease and death. In South Africa, research has shown that the commonest symptoms in stage 4 AIDS are pain (98%), weight loss (81%), loss of appetite (70.9%), low mood (69.9%), weakness (66%), dry skin (56.3%), diarrhea (53.4%), nausea and vomiting (44.7%), cough (44.7%), and fatigue (42.7%). 
With the identification of palliative care needs, high quality AIDS care can incorporate all the aspects of good palliative care addressing physical, medical, spiritual, and psychosocial components. With the advent of antiretroviral treatment, there has been a reduction in the stigma of AIDS and communities are beginning to accept patients with the disease.  The management of patients initiated on ARV treatment is complex and there is a need for step down medical care to support patients in the initial phases. Dr Tony Moll has observed from experiences in Kwazulu Natal that without this care these patients "would almost certainly otherwise expire in the overburdened and understaffed state hospital." Step down care in this setting would include good palliative care.
The patients were selected from the admissions to the medical ward in the 4 month period from February 2005 to May 2005. They fulfilled the criteria of being in stage 3 or 4 HIV infection as defined by the World Health Organization (WHO),  were adults and well enough to be interviewed and had signed a consent form administered in their home language, in which it was made clear that the patient would not be disadvantaged by refusing to be interviewed. The aim was to have 50 patients interviewed.
The interviews were conducted by three interviewers, two honors students in psychology, and the author. The interviews were conducted with the help of a member of the nursing staff who acted as a translator. Even if the patient spoke English, the interview was conducted in the patient's home language. The interview consisted of 60 questions which covered demography and religious affiliation, employment and financial situation, the family demographics, social situation including housing, access to electricity and running water, access to media such as radio and television, access to transport and the relationship with the family, and whether they were aware of the diagnosis and the severity of the illness. Included in the questionnaire were questions about the patient's emotional and physical state and symptoms that were bothering them, when the diagnosis of HIV had been made and what treatment they were receiving and what they needed in the way of treatment and psychosocial support. The interviewer in addition would add an assessment of the physical and mental state of the patient. Following the interview, actions were planned to resolve the issues that had been raised, contacting the clinician involved with the case, referring to the social worker or to the local hospice for follow-up.
The study received ethical approval from the ethics committee at the University of Cape Town.
The study included 50 patients out of a possible 55, three were too sick and two refused. The study was concluded after 50 patients were interviewed.
In total, 70% of the patients were female which reflects the pattern of HIV in sub-Saharan Africa, where the main mode of transmission is by heterosexual penetrative intercourse.  Only three of the women were married and living with their husbands. The average age of the patients was 36 years (37.6 among the males and 35.2 among the females). The patients were either living in the town (68%), or living on a farm within a 50 km radius of the town (32%). Among the urban dwellers, 52% lived in brick houses, 26% in mud houses, 14% in cement houses, 6% in corrugated iron houses, and only 1 in a shack. Of the rural dwellings, 44% were brick, 38% mud, and the remainder cement. Overall 72% had access to electricity and 52% had running water in the house. The remainder relied on paraffin for cooking, lighting and heating, and a communal tap for water. Only two patients had their own transport and the remainder relied on public transport. The employment rate among the patients was only 12%, and of the remainder, 57% had stopped working and 43% had never worked, and only 36% of those who were unemployed had grants. The remaining 28 patients had neither income nor a grant and were reliant on family support. One patient was still at school. Education levels were poor with only 10% having passed matric (high school leaving certificate), 10% failed matric, 46% reached senior school, 32% reached primary school, and 1 patient, 2%, had never been to school. Poor education was a factor influencing socioeconomic factors. Only 46% of the patients had a funeral policy and 22% had made a will. There were 65 children dependent on the patients interviewed and none of the patients had made any provision for the future economic support for these children other than requesting the social worker to apply for a child grant from the state. The response to questions about the need for social support indicated that 72% of patients felt the need for some form of social intervention, particularly help with grants and children.
Despite the perception that isolation and rejection are experienced by AIDS patients, psychospiritual issues were surprisingly not a major issue. Eighty percent had support from the church and actively participated in church activities and were visited by members of the church. Ninety percent had regular family visitors and had close ties with family members who were aware of the diagnosis, although very few had many friends visiting them possibly because they did not want the community to become aware of the diagnosis.
Questions about mood and depression were difficult to asses as the patients battled with the concept of depression. However, 86% admitted to being anxious about the future, their families, or money. Thirty-four percent admitted to being sad (possibly depressed) and 36% wished to have counseling or to be referred to hospice for support and for help with family issues.
The patients were all medically sick and only two were on antiretroviral therapy and 94% felt the need for medical treatment to control symptoms that were distressing. The commonest unresolved physical symptoms were loss of weight (64%), pain (60%), cough (58), weakness (52%), fatigue (48%), and fever (36%). [Table 1] indicates the medical symptoms that the patient perceived as being severe.
These symptoms were not being addressed by the medical professionals working in the medical wards. The reasons for this neglect were complex and included a very heavy work load, a perception that there was no hope of recovery (all the patients with AIDS had died in the past), the fact that the patients were too weak to volunteer symptoms and only extensive and very patient questioning elucidated the problems they had, and the focus was on medical treatment rather than symptom control and this often led to assumptions about the cause of the clinical illness.
An attempt to address the palliative care needs often resulted in further investigation, talking at length to the patient and the family and getting a much clearer picture of what the patient was experiencing.
The patients were re-evaluated in the 2 weeks following the conclusion of the research program.
The mortality among the patients was 32%. The remaining patients were referred for tuberculosis (TB) therapy (12% were admitted to the TB hospital), referred to Hospice (20%), or to the local clinics (12%), for antiretroviral treatment and were on the antiretroviral program (14%). Ten percent of the patients were discharged home either because they refused all other management or were disinterested in going on ARVs. The patients were regarded as terminally ill and, therefore, not all the patients had a CD4 count. Among the 29 patients in whom a CD4 count was available, the average CD4 count was 101. Of the 21 patients who did not have a CD4 count, 10 died. It is possible that these patients were considered too ill to have a CD4 count as performing this test in a resource poor setting would indicate an intention to treat with antiretroviral drugs. In general terms, CD4 tests are done only as a part of the ARV program.
Among the patients who died, the treatment required was primarily medication to make them more comfortable such as morphine which had often not been started because of resistance on the part of the medical and nursing staff, because of fears of addiction and speeding up death, haloperidol, dexamethazone, amitryptilene, and mouth care.
Among the patients who survived the intervention was often much more extensive, including investigations, recommendations as to treatment and exploring past records as well as hospice instituting home-based care and family support.
Most of the patients with AIDS present at a late stage in this hospital because of issues of denial, failure to have voluntary counseling and testing (VCT), and fear of stigma. At this late stage, the patients with AIDS are generally weak and have a large number of symptoms which predispose to an early death prior to initiating treatment with ARVs. The medical perception that the patients were terminally ill often results in a lack of further investigation or treatment. Meticulous attention to symptom control, the hallmark of palliative care, which often included much more attention to diagnosis of the cause of the symptoms, and probably the introduction of the hope of improvement, led to an improvement in outcomes even in this preliminary study in that 68% of the patients survived with additional treatment implemented as a result of the study. Implementation of ARV treatment requires improving clinical status sufficiently to prevent mortality before the treatment is started. Palliative care has an important role to play in this respect and in addition may well have a role to play in increasing the hope of a successful outcome with treatment. Improved outcomes will impact positively on communities and lessen the stigma and the fear of the disease resulting in more widespread uptake of VCT and earlier diagnosis and treatment.
Implementation of good palliative care in a general ward is difficult because of issues of privacy, the need to involve the family and the requirements for extensive psychosocial management. The results of this study suggested that the survival outcome in these patients could be improved by having a dedicated ward for palliative care, and led to the development of a model to implement such a ward.