PALLIATIVE CARE

Palliative care tries to help people who suffer from illnesses that may cause death, to have a better quality of life. It helps to prevent suffering and helps patients and families cope with pain and emotional and physical problems.

RIGHT TO PALLIATIVE CARE

Section 27 of the Constitution gives every person the right of access to health care services. The National Health Act of South Africa aims to promote the health of all people, and the South African Patients’ Rights Charter states that “Everyone has the right of access to healthcare services that include provision for special needs in the case of … patients in pain… palliative care that is affordable and effective in cases of incurable or terminal illness’.”

To realise these rights government needs to put in place a policy on palliative care so that this can form part of the comprehensive healthcare system in both the formal and informal healthcare sectors. Access to healthcare depends on access to doctors, nurses, dentists and pharmacists. In South Africa, as well as internationally, there are several different problems confronting human resources within health care services, including:

• Shortage of professional staff in rural areas and poor urban areas
• Many healthcare workers leaving the public health system and going to countries where payment and conditions are much better
• The impact that HIV is having on the capacity of the health system by greatly increasing the numbers of people in need of care

Organisations such as the Hospice Palliative Care Association of South Africa (HPCA) provide palliative care and support. It is difficult for these organisations to find adequate resources to meet the growing needs. See www.apcc.org.za and click on ‘Find a Hospice or Palliative Care Centre” to find hospices in your province.

OBSTACLES TO ACCESS TO PALLIATIVE CARE

While organisations such as HPCA continue to provide palliative care and support there are a number of obstacles standing in the way of people accessing their right to palliative care. These include:

• Lack of access to an appropriate place of care, for example, a hospice or a home-based care service
• Lack of integration of palliative care into government health programmes
• Lack of palliative care education and training for doctors and nurses resulting in professionals who are not able to deal with the clinical and emotional issues in caring for patients for whom cure is no longer an option
• A shortage of trained palliative care staff
• Legislation that only allows doctors to prescribe specific medication that can provide pain relief; this limits access to pain medication for many patients in need as it is homecarers – not doctors – who are attending to patients in their homes. The South African Nursing Council (SANC) and civil society are working on regulations that will allow professional nurses to prescribe and administer medication in cases requiring pain management.
• Geographic challenges in rural areas where the infrastructure is bad, for example, poor road conditions and no public transport make it difficult to reach people in need and to provide the appropriate medication
• Fear of the stigma attached to terminal illnesses means families often delay contacting an organisation such as HPCA to treat the sick person at home, or they prefer to treat the person on their own without support
• Language barriers between caregivers and patients
• Cultural barriers where some cultures believe that talking about death invites death, or not acknowledging their illness leads to a delay in accessing palliative care
• Religious beliefs where some people believe in the power of prayer and not medical care
• Women generally play the nurturing role and men often distance themselves from caring for the very ill as they see this as a woman’s task. This puts a burden on female members of the family and limits the responsibility of the male in the home in caring for ill members of a family.
• In child-headed households where the child replaces the parent, it places a big responsibility on the child if a member of the household is very ill, and this often leads to poor compliance with the medication, and other logistical problems

Information for this section was taken from Legal Aspects of Palliative Care developed by the Association of Palliative Care Centres (APCC). Download a copy of the Law Manual from:   www.apcc.org.za, click on Resources/Law Manual.

MEDICAL COSTS

Public healthcare offers free access to anti-retroviral treatment nationwide. However, people living with HIV/AIDS may also want to use private health care, especially if they are on a private medical scheme. Private healthcare offers prescribed minimum benefits (PMBs). PMBs are a set of minimum benefits which, by law, must be provided to all medical aid scheme members and include the provisions of diagnosis, treatment and costs of ongoing treatment for a list of 27 chronic conditions including HIV/AIDS.

CHILD SUPPORT

Under the Social Assistance Act the following grants are available for the support of children, including children living with HIV, or whose parents are living with HIV or AIDS:

• Foster Care Grant (See Foster Care Grant)
• Child Support Grant (See Child Support Grant;
• Care Dependency Grant (See Care Dependency Grant)