A palliative care perspective on nutritional support

What key palliative care resources have to say about nutritional support

“In many areas of Africa, caring for people living with HIV/AIDS requires dealing with the underlying problems of poverty, food security and lack of adequate, appropriate diet,” wrote Dr Liz Gwyther and colleagues in A Clinical Guide to Supportive and Palliative Care for HIV/AIDS in Sub-Saharan Africa. “Providing quality care and support requires addressing the nutritional needs of people with HIV at all stages of the disease. Because good nutrition can contribute to a person’s well-being at all stages of the illness and may prolong life, it is an important part of holistic palliative care.”

As our main article explains, people with HIV have increased nutritional requirements, many of the conditions affecting people with HIV can lead to malnutrition, and conversely, malnutrition can cause or aggravate many of the clinical conditions diagnosed in people with HIV. Providing nutritional support for the people with AIDS is a logical extension of the basic package of care to improve their physical wellbeing.

But it can also be much more than that, because nutrition and food security are also social concerns that impact upon the family, and a patient’s role in the family. Adults who are ill with advanced HIV disease or tuberculosis may not be able to provide food for their families, or may feel like they are a drain on their family’s resources:

“Imagine a young woman with three children… she lives in a shanty town.  Her husband died six months ago and the neighbours say he must have had HIV. Now she is becoming sick, has lost weight and she is scared that she may also die. Recently she developed a painful ulcerating swelling on her leg which stops her sleeping. Some days she can barely get out of bed to care for her children, but her parents are far away in the village. The landlord is asking for rent but she has no income since her husband died. The neighbours are gossiping, saying that the family is cursed, and she wonders if they are right, since she has prayed for help but none has come.

If you were that woman, what would be on your mind? We can imagine that her illness is only one of her many problems. Her greatest worry might be how to put food on the table for her family, or what will happen to her children if she dies. She has no financial support, she is isolated and feels rejected by God.

Palliative care is about people rather than diseases and seeks to address the problems which are of most concern to the patient.”

from the (Palliative Care Toolkit: Improving care from the roots up in resource-limited settings)

Not having enough food to put on the family’s table can contribute greatly to someone’s psychological suffering. And in many parts of Africa, the job of putting food on the table largely falls to women — who are also disproportionately affected by HIV/AIDS.

“Women typically bear the brunt of multiple roles.... They have the burden of caring (physical and emotional) within the home, ensuring food security (including production of food for household consumption), and maintaining the entire household work” wrote Gwyther et al. “Gender and socio-cultural norms often dictate ‘men and boys preference’; in times of scarcity, families allocate resources for men and boys first and women and girls later or not at all. For example, in Uganda, men and boys are fed first. Women themselves continue this pattern because of being socialized to sacrifice their own interests. They often put the health of their children and families first and tend to remain silent about their own health problems.”

It is also important to remember that it may have been food insecurity that launched the chain of events that led to HIV infection in the first place: by forcing individuals to migrate to find work, breaking up families and increasing the risk of having multiple partners. For most women who engage in sex work in resource-limited settings, it is survival sex — in order to provide food for themselves and families. Importantly, ongoing nutritional support for families and children affected by HIV/AIDS is important to prevent this cycle from repeating.

Engaging palliative care support teams for nutritional support

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.