What it is
Palliative care is an approach which improves the quality of life of patients and their families facing life-threatening illness, through the prevention, assessment and treatment of pain and other physical, psychosocial and spiritual problems.
Why it is Important
Palliative care is an essential component of a comprehensive package of care for people living with HIV/AIDS because of the variety of symptoms they can experience - such as pain, diarrhoea, cough, shortness of breath, nausea, weakness, fatigue, fever, and confusion. Palliative care is an important means of relieving symptoms that result in undue suffering and frequent visits to the hospital or clinic. Lack of palliative care results in untreated symptoms that hamper an individual’s ability to continue his or her activities of daily life. At the community level, lack of palliative care places an unnecessary burden on hospital or clinic resources.
How it is done
Deciding who is to provide palliative care
Deciding where palliative care can be provided
In all of the above, symptomatic care and pain control using the full analgesic ladder should be incorporated.
Human Resources, Infrastructure and Supplies Needed
Trained family members, community volunteers or health care workers will be required in sufficient numbers to provide adequate care without overburdening individual carers. Ideally a mix of all three will be used, with hospital or clinic based health care workers used for initial teaching and periodic follow-up in the home. Palliative care should be included in the curriculum of medical, nursing and other health professional students to ensure that health care workers are sufficiently prepared to care for PLWHA in all settings, and are able to train family members and community volunteers.
As noted above, palliative care will necessitate policies and guidelines being in place at the institutional level to ensure that family and community members are trained to care for PLWHA. Regulations regarding the use of morphine need to be revised as some regulations requiring a doctor’s prescription constitute obstacles to access to these painkillers in settings where there are not enough doctors. Subsequent to guidelines being established, basic medications and supplies can be provided in the hospital, clinic or home settings. Procurement, storage and distribution will be integral to any programme seeking to provide palliative care.
The cost of providing palliative care will depend on a number of factors: chiefly, the supplies and medications made available and the involvement of trained health workers in home visits. Palliative care, which relies on community volunteers, will be far less costly. Average cost for medications per patient-year for palliative care has been estimated to be approximately US$ 19 in both Sub-Saharan Africa and South East Asia. In an analysis of the cost of eight home-based care programmes in Zambia it was found that community-initiated care was both more effective and less costly, with six months of care averaging US$ 26. In some settings in Uganda where the full use of the analgesic ladder is employed, costs have averaged US$ 7 per week. While the initial cost of using home based cared for PLWHA may seem high, this cost should be measured against savings at the hospital or clinic – as well as the overall impact on the family and community in terms of education, reduction in stigma and discrimination, etc. Whether provided in the home, clinic or hospital, palliative care need not be unduly costly if human resources and basic medications and supplies are used appropriately.