In resource-limited settings, the lack of available disease-specific therapies for some conditions increases the need for symptom control and supportive therapies to improve the quality of life for people with HIV/AIDS.
Internationally, numerous palliative care programmes have been developed and non-governmental organisations/community-based organisations have set up home based care (HBC) teams to provide support, nursing or household help and to even dispense inexpensive symptom relieving drugs such as morphine or anti-histamines to people living with HIV/AIDS (PLHAs).
But some activists and doctors believe that there is an undue emphasis on palliative care over treatment.
On a governmental level, palliative care programmes have just been a way to duck out of providing treatment. They set up a cheap palliative care program to appear compassionate but they are actually just writing off people with AIDS, said one treatment educator in Cape Town. Palliative care providers are trained to expect or even anticipate the death of their patient, she continued sometimes they dont even think to look for the cause of a symptom.
And often, the best way to reduce suffering from a symptom is to diagnose and treat its cause. Some medications that can treat or prevent infections in PLHAs are relatively inexpensive to provide and could be administered with minimal trouble or discomfort to the patient. And if the illness causing the symptom is not treated, the patients suffering is likely to grow worse despite palliative care and could eventually cause the patients death.
Many causes of HIV death are due to potentially treatable conditions, Dr. Douglas Wilson noted in the last issue of HATIP. But PLHAs and people providing palliative care may not know when a condition they have is treatable. Part of the danger for patients receiving home-based palliative care, is that they are often beyond the reach of doctors or primary health care facilities. If palliative care programmes trained caregivers to recognise the signs of life-threatening conditions, they could perhaps refer the patient to a healthcare professional or primary care facility in time for diagnosis and treatment. But such education is often neglected.
Citing an example, the nursing educator told HATIP about a PLHA who was receiving palliative care from a HBC team. The patient had difficulty swallowing, couldnt eat and subsequently died of starvation. But her inability to swallow was caused by oesophageal candidiasis that could have been easy treated by fluconazole supplied to the patient for free. These sort of horror stories happen all the time she said.
Because of its historical associations with end-of-life care, there is this negative association that people on palliative care are going to die, which just feeds into the sense of fatalism that is so pervasive here."
"This makes the patient and their family worry about the financial burden that they will become, and the humiliation the family is enduring, particularly when there is so much AIDS bias. At a relatively early point in HIV disease, a person may fall ill from a treatable condition, such as bacterial pneumonia or TB. They arent referred to medical care but instead the palliative caregiver keeps them quiet and sedated, and their infection goes untreated until they die. A lot of people are just swept under the carpet this way, often to their familys relief.
She believes that fairly simple measures could do much to improve the health and quality of life for PLHA in the developing world even before the roll-out of antiretroviral therapy. Training first tier and community health care workers to recognise emerging symptoms and signs of serious illnesses such as TB and other life-threatening conditions would encourage more timely referral to a clinic or physician for diagnosis and treatment. However, many parts of the developing world are hundreds of kilometres away from such a facility. Likewise, physicians are in short supply. Nurses are often the only medical professional within easy access of most PLHAs. Such nurses are often faced with the challenge of trying to diagnose the cause of a symptom without ready access to pathology labs.
But even with this handicap, a nurse with a thorough understanding of the symptoms and illnesses in people with HIV can manage some of the more important infections. Very simple algorithms using symptoms and other clinical criteria can be taught successfully and used to diagnose some of the more common or serious treatable illnesses by nurses and community health care workers (and possibly even traditional healers.
HATIP Advisory Panel member, Chris Green adds: Many traditional healers have effective symptomatic responses to these symptoms. And frequently they have diagnostic powers which match those of allopathic healthcare workers.
While these algorithms might be crude and inexact compared to the definitive diagnosis at better-equipped facilities, and some patients will fall through the cracks or be misdiagnosed, they should be able to diagnose a number of treatable infections. Finally, the nurse should be provided with certain essential drug therapies and instructed how to safely administer and monitor the treatments in patients.
The approach may not be perfect, but it could prevent most of these unnecessary deaths by either managing the illness, or at least stabilizing the patient long enough to be able to refer them to a primary care facility., he went on.
But there are some concerns about this approach, such as making sure that the patient doesnt get lost in the Herculean effort to save his or her life. This worries me a little bit said Mr. Green for number of reasons. We run the risk of using heroic attempts to extend life in ways that neither the patient nor the family are comfortable with. Also, the side effects or other effects of some of these treatments may be worse than the condition.
I think we need to be very clear over the objective of the care which we are providing and ensure that all concerned understand this, and agree and accept it. We must be cognisant of the fact that people with AIDS are probably going to die unless they get ART fairly soon.This can be extremely distressing for carers and family. Thus the objectives may be to: (1) prolong life long enough to allow access to ART; allow the patient to achieve some milestone (Christmas, childs birthday or wedding, etc.); or conversely (3) die in reasonable comfort and dignity at home, with the support of family.
Many problems are extremely difficult to diagnose particularly fever and diarrhoea; Mr. Green continued patients can feel that the health care worker doesnt know what he/she is doing and is trying anything to cure the problem, that they are swallowing more and more (and more expensive) pills, that they are being used as guinea pigs, and that nothing seems to work, and they lose faith in the care giver, and lose hope.
HATIP Advisory Panel member Dr. Vijay Prabhu has laboured for years to provide salvage care for PLHAs who have received incompetent or bungled treatment from other doctors and health care workers. Understandably he is apprehensive of putting diagnosis and care into the hands of junior medical personal, not to mention non-traditional caregivers, or of accepting a lower standard of care that may be provided in such settings.