The Hospice Palliative Care Association of South Africa (HPCA) gave a presentation on palliative care within the framework of primary health care. Palliative care was defined as an area of healthcare that focused on relieving and preventing the suffering of patients. HPCA supported a vision of “a long healthy life for all”. It noted that palliative care included a high emphasis on the quality of life, active living and a prolonging of life, coupled with other therapies. This Association worked well with the Department of Health, in particular district hospitals, through the Home Based Care programme. Palliative Care offered dignity and emotional and spiritual support of patients and family members, especially during the end of life phase. The organisation expressed concern around discontinuation in treatment by patients suffering from HIV. The Association also practiced pediatric palliative care, and this included the care of children whose parents were ill. It was noted that the care of seriously ill patients provided powerful teaching moments for prevention messages.
The organisation was charged with accrediting its members, and full adherence to standards of governance, management and palliative care are encouraged. A needs assessment carried out by the organisation indicated that in 2008 approximately 400 000 South Africans died from predictable causes and only 72 816 patients were cared for by HPCA member organisations. In 2012, there were 42 807 black patients on palliative care, about 77% of the total in that year. The cost of home based care was around R900 per month. Palliative care had been incorporated into many policy documents, including the Patient Rights Charter but had not yet been fully implemented. HPCA was working closely with the South African Nursing Council and the Health Professionals Council to assist in the training of palliative care staff and to get this branch incorporated into the curriculums. HPCA would host the Africa Palliative Care Conference from 17 to 20 September 2013 in Johannesburg.
Members asked if HPCA supported euthanasia, with two Members raising questions whether it was really in the interests of terminally ill people to prolong their life. They asked about funding of the organisation, the relationship with the Department of Health, expressed some concern at mushrooming of hospices around the country, wondered about the controls exercised and whether there was sufficient support in rural areas. They wondered if there was any support from the pharmaceutical firms, and the Chairperson commented that operations manufacturing intoxicating substances should contribute to the funding of hospices.
Hospice Palliative Care Association of South Africa
Dr Liz Gwyther, Chief Executive Officer, Hospice Palliative Care Association of South Africa, took the Committee through the objectives and operations of this association (HPCA). This was aligned with palliative health care strategies of the Department of Health (DOH or the Department). HPCA emphasised physical comfort with control of distressing symptoms, and also support during bereavement. Continuous treatment support was also provided, in particular, to persons on Anti-Retroviral treatment (ARVs). She noted that research had shown that treatment support in the home enhanced retention in care. The care of seriously ill patients also assisted in spreading prevention messages at household and micro-community level. She indicated that palliative care was not in the curriculum of most nursing and medical schools. The HPCA was engaging South African Nursing Council (SANC) and Health Practitioners Council of South Africa (HPCSA) to ensure that it was introduced into the curriculum. The organisation also assisted in the care of children whose parents were ill, and would work with teachers in helping children to overcome their grief.
The HPCA accredited its members and encouraged high standards of governance, management and palliative care. It also conducted surveys to assess the level of compliance with standards. The organisation assisted members in training and offered a mentorship process to achieve full accreditation.
According to the World Health Organisation an estimated 667 900 deaths occurred in South Africa in 2008. This included an estimated 415 000 deaths for predictable causes, including: HIV (263 000), non communicable diseases (83 700), cancer (48 800) and tuberculosis 19 500. HPCA member organizations cared for 72 816 patients that year but not all died in this time. The dying experience of approximately 400 000 South Africans remained unknown but was in most cases undignified.
In 2012, hospices cared for 42 807 black patients, or around 77% of the total number of patients on palliative care. There were about 2 668, or 5%, of white patients. The majority, 18 923 patients, cared for came from KwaZulu Natal province. Limpopo had the least number of patients at 940 and this was attributed to the fact that the province had fewer palliative care providers. The cost of supervised Home Based Care per patient, monthly, was over R900. Palliative care had been incorporated into many policy documents, including the Patients’ Rights Charter but had not been implemented. The services of palliative health currently remained largely a non-governmental function. HPCA would be hosting the Africa Palliative Care Conference from 17 to 20 September 2013 in Johannesburg.
The Chairperson noted the importance of the discussion, and pointed out that death was inevitable. He also stressed the fact that the majority of South Africans did not have access to medical insurance and thus would not enjoy the privilege of palliative care at an advanced age. He believed that consideration around euthanasia would probably feature during the discussion.
Ms D Robinson (DA) asked if the nation was doing patients a favour by prolonging life when the quality of life was so poor, particularly given the shortage of medication.
Ms M Segale Diswai (ANC) wanted to know the background of the presenters and their working relationship with the Department of Health. She asked how the organisation worked with hospices around the country, and the effect of some hospices mushrooming around the country. The location of hospices throughout the whole country was also queried. The issue of including palliative care into nursing schools curriculum was also emphasised.
Mrs R Motsepe (ANC) asked how HPCA monitored the home based care programme, since it had been mentioned that most of its staff did not have transportation.
Mr G Lekgetho (ANC) thanked the presenters and asked about the availability of professional nurses in palliative health care. He noted that he was a staunch supporter of euthanasia, and asked whether it was possible to introduce euthanasia in the current dispensation.
The Chairperson pointed out the importance of giving a good diagnosis. He also noted that Mr Lekgetho had asked the same question, around euthanasia, to the ANC Secretary General Gwede Mantashe, and had not received a response.
Ms H Msweli (IFP) asked for more clarification of what exactly the term palliative care encompassed. She also asked about the abbreviation HAART.
Mr D Kganare (COPE) was interested in the source of funding and medication. He also asked if pharmaceutical firms, as part of their social responsibility, assisted the organisation. He too asked for more detail about how the HPCA worked with the Department of Health.
Ms T Kenye(ANC) noted that the organisation should have been better prepared for the presentation and stressed that it should send accurate documentation. She asked HPCA to unpack the governance structure more clearly.
Ms D Robinson asked for the definition of acronyms and the statistics of hospices in rural areas.
Dr Gwyther encouraged members to visit the website at www.hpca.co.za and find out more details about the location of various hospices.
She noted that HPCA was a national association and member organisations chose to become part of it because of the benefits that it could offer. These benefits included funding, when this was still available from USAID. It was also stressed that in each province there was provincial representation. The organisation’s hierarchy was tasked with dealing with specific provinces. Provincial staff reported back to the national office.
The accreditation system was based upon fulfillment of certain guiding principles, which included: management principles, financial management, medication management, governance, quality palliative care, and compliance with patients’ rights, amongst others. At each hospice, a professional nurse supervised hospice workers, who were tasked with going into the homes of palliative patients. The organisation also carried out a needs assessment of each district centre. Patient information was kept strictly confidential, but palliative care staff would have information on their patients, in order to track the diagnosis and treatments. Mentorship was provided to members, and this could include financial management and palliative care management.
Ms Zodwa Sithole, Advocacy Manager, HPCA, answered the question on governance, pointing out that Dr Gwyther was a medical doctor and she herself was a professional nurse, so that HPCA management had the requisite skills pertinent to their field. At the moment there were over 180 member hospitals belonging to the Association, the majority of which were in rural areas. Lack of funding has meant that the organisation could not reach more rural areas. She also shared the experience of patients suffering from excruciating pain and pointed out that the general training currently given to health professionals did not cover a lot of pain management. HPCA was working with nursing institutions to facilitate the introduction of palliative care into the nursing curriculum.
Dr Gwyther noted that most of the funding came from USAID and other international donors such the Princess Diana Memorial Trust and the Open Society Foundation. Locally, ABSA, Standard Bank, FNB and Anglo American assisted in funding. Member organisations also raised funds through various community initiatives. Some medical aid schemes also catered for palliative care, but not all. All hospices funded their own inputs and patients did not pay for anything if they could not afford it. In some provinces, the provincial departments of health funded hospices.
Ms Sithole pointed out that the majority of their patients were indigent and could not afford the cost of palliative care.
Dr Gwyther also noted that medication was provided by clinics and hospitals and it was not necessary that patients were admitted into hospital. Hospice nurses had been trained in pain management and assisted patients at home.
Dr Gwyther commented that there was a viewpoint that euthanasia was a violation of human rights as pain could be managed, and there was no need to end life because someone was feeling severe pain. Health professionals must be trained on pain management. People could live with good quality, despite a terminal disease, and without pain. Euthanasia could not be part of the debate in South Africa until the healthcare system improved.
The Chairperson expressed concern about the mushrooming of hospices and said this concern needed to be addressed. He also suggested that companies that manufactured intoxicating substances needed to contribute to the funding of hospices.
The meeting was adjourned.
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