Specialists working in palliative care are trained to recognise these needs, and work to prevent and relieve suffering “by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.”
Assessment of the patient’s holistic needs is an essential part of palliative care, and during the initial work-up, palliative care resources recommend performing a thorough nutritional assessment immediately following the pain assessment.
While healthcare providers are encouraged to integrate nutritional support into the care of people with HIV, in settings where there may not be a trained nutritionist on staff, and/or the capacity to address an individual or their family’s need for nutritional support is limited, local palliative support organisations should be able to help provide some of these services, augment or expand upon the services that are being offered, and provide linkages to other community or faith based organizations that provide support to families. (Please consult the resource list).
If there are no local palliative care organisations nearby, healthcare providers can still adopt palliative care approaches to try to provide more comprehensive holistic care to the patient and family. Both the Clinical Guide and the Palliative Care Toolkit, contain a wealth of practical common sense clinical information about how to manage weakness, nausea, poor appetite, loss of taste and other nutritional consequences of the different opportunistic infections and common HIV-related conditions.
However, it is important to realise that no doctor, nurse or clinic can attend to a patient’s every need by themselves — it takes a team approach.
“Programmes should establish a resource list that includes large NGOs, FBOs, and private businesses that are sources of bulk food or are able to warehouse and distribute it to organisations that visit families in their area of operation,” according to the Clinical Guide to Supportive and Palliative Care for HIV/AIDS in Sub-Saharan Africa.
In addition to directly providing food, the Clinical Guide suggests organisations can help families by establishing community gardens and income generation projects — which may be particularly important for orphans and vulnerable children, and in the long run, should be more sustainable:
“Children can be taught how to grow their own vegetables in communal vegetable gardens. In addition to being a source of nutrition, this provides them with an opportunity to develop a sense of achievement and self-worth. Income generation projects represent one strategy to promote food security and are well within the scope of smaller NGOs.”
The Palliative Care Toolkit describes one such project in Cape Town
“Kidzpositive is a clinic providing AIDS care for children. Clinic staff saw that the children were receiving good medical care and symptom control, but the social isolation and financial problems affecting their mothers were not being addressed. Now they stay at the clinic for the whole morning, chatting together over tea and bread. The mothers do bead work at the clinic, or take it home, making items to sell. This project supports 130 families with enough money to put food on their tables.” Dr Paul Roux, Cape Town.
Income generating projects like this don’t merely address the family’s need for sustenance — they also reduce the need for a ‘hand out’ and help people become more self-sufficient. At the same time, they strengthen the community by weaving it more closely together, providing participants with a means to support each other and work towards a common goal.
This is the palliative care approach — not looking at people’s nutritional needs in isolation, but considering its impact holistically and upon the community. Finding long-term, sustainable solutions to these problems is ultimately the best form of palliative care.