The Hospice Palliative Care Association of South Africa (HPCA) is an association incorporated under Section 21 of the companies act (registration number: 1986/001887/08). The HPCA was founded in 1986 to address the needs of individual hospices and provincial associations to have a united, national body who would advocate for palliative care in South Africa and internationally, build on hospice resources and skills to provide effective, supportive care to communities in need.
HPCA is a national organisation with members operating in nine provinces and 51 health districts. It has 166 service sites where care and support is provided for close to 100 000 patients per year of whom 97 percent are cared for at home. The organisation has a development team in each province which is made up of two palliative care development officers and a monitoring and evaluation officer. These teams are headed by a regional manager.
The World Health Organisation (WHO) defines palliative care as an approach that improves the quality of life of patients and their families facing problems associated with life-threatening illness, through the prevention and relief of suffering, the early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.
The definition goes on to elaborate on some key issues including the fact that palliative care will enhance the quality of life, and will positively influence the course of illness and is applicable early in the course of illness, in conjunction with other therapies that are implemented to prolong life or cure the illness.
HPCA Vision: Quality Palliative Care for all
HPCA Mission: To promote quality in life, dignity in death and support in bereavement to all persons living with a life-threatening illness by supporting member and partner organisations.
- To work with hospices and provincial associations towards the realisation of a common vision of quality palliative care for all;
- Integrate palliative care into all healthcare settings;
- Maximise the reach of palliative care training;
- Improve awareness and recognition of palliative care;
- Develop and improve funding strategy and sustainability of palliative care services;
- Develop and implement HPCA transformation strategy;
- Strengthen and maintain organisational capacity and sustainability of HPCA.
- Main activities and services
- Assistance to nonprofit (NPOs) and other facilities in organisation development, personnel development, Governance structures and development of specific services such as palliative care, TB care and orphaned and vulnerable children (OVC) care;
- Assessing organisational capacity using the HPCA Organisation Capacity Assessment (OCA) tool and drawing up of an organisational development plan to address capacity needs identified in the assessment;
- Mentorship, training and coaching to assist organisational development according to development plans. HPCA, in partnership with the Council for Health Services Accreditation for Southern Africa (COHSASA) have developed standards for NPOs which guide leaders on aspects such as governance and leadership, human resources, risk management, fundraising, quality Improvement, support services and patient care standards. HPCA’s mentorship and training programme is aimed at helping non-governmental organisations achieve these standards to provide quality care and services;
- Development of plans for capacity building and support for scale-up of effective and efficient models and approaches for HIV-related services in line with SAG priorities and based on HPCA’s past experience;
- Structured HPCA Health System Strengthening (HESP) methodology and building sustainable partnerships to improve the quality of care and extend the reach of care. Currently, HPCA members are implementing the HESP programme in 39 health districts, with further roll outs planned;
- Conduct audits to ascertain patient and family palliative care outcomes using the validated African Palliative Care Association Palliative Outcome Scale (APCA POS) and linking this to quality improvement activities for Better Patient Outcomes;
- Leadership Development Programme provided to build capacity of managers in the health care sector;
- Integrated Access to Care and Treatment (one ACT) implementation and training experience, to promote early recruitment, referral and retention of newly diagnosed people living with HIV/AIDS into care and support;
- A powerful Household Data Management System, capable of collecting data at the community level and reporting thereon. This system captures care interventions, duration, household member and patient information and can draw reports which are useful for decision making purposes;
- Gender considerations are integrated into the HPCA Standards of Care and the use of the HPCA Gender Guidelines is promoted at all HPCA sites; and
- Development of training curricula and provision of training to Professionals and caregivers in palliative care, TB and palliative care, paediatric palliative care, loss, grief and bereavement, leadership, governance, technical assistance and monitoring and evaluation.
Palliative care is a relatively new speciality which has unfortunately been applied for end of life purposes only in the South African context. There is thus fear on behalf of professionals to implement palliative care principles early on in a patient’s illness regardless of whether they are receiving treatment for cure or not. Palliative care is a holistic, patient centred approach which includes the quality of life for all patients and their families from the moment of diagnosis of a life threatening illness.
Because palliative care is a holistic approach, HPCA is faced with overwhelming needs of patients and their families which include abject poverty, poor nutrition, family breakdown, vulnerable children, deep rural conditions, high exposure to TB, abuse, violence, complicated grief in families and a sense of helplessness. To improve the quality of life for patients and their families, these needs need to be addressed to empower the family to cope with the life threatening condition effectively. Poor resources and lack of referral structures make this very difficult.
Many patients diagnosed with life threatening illnesses experience severe pain and distressing symptoms which are not controlled. HPCA strives for the recognition of pain and symptom relief as a basic human right for everyone.
Through continuous effort and determination, HPCA is pleased to see the inclusion of palliative care in national plans such as the NSP and some provincial plans. HPCA has also seen palliative care recognised as a care and support programme essential to assisting patients diagnosed with HIV, TB and non-communicable diseases. More professionals are being trained in palliative care and it is included in the family medicine curriculum for doctors.
HPCA member organisations provide palliative care services to approximately 50 000 patients and their families per month.
To achieve the organisation’s vision, HPCA has been engaging with strategic partners such as Department of Health (DoH), Department of Social Development (DSD), Department of Correctional Services (DCS) and other NGOs. Together it can be ensured that all South Africans diagnosed with a life threatening illness are cared for in a holistic manner which addresses their physical, psychosocial and spiritual needs.
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