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HEALTH PORTFOLIO COMMITTEE
12 September 2006
WITS PALLIATIVE CARE, HOSPICE AND PALLIATIVE CARE ASSOCIATION AND THE PALLIATIVE CARE ASSOCIATION OF SOUTH AFRICA: BRIEFINGS
Chairperson: Mr L Ngculu (ANC)
Documents handed out:
Hospice and Palliative Care Association Presentation
Wits Palliative Care Annual Report May 2005-April 2006 (not presented)
The Comprehensive HIV and Aids Care, Management and Treatment Plan for South Africa
Wits Palliative Care, the Hospice Palliative Care Association of South Africa and the Palliative Care Association of South Africa gave the Committee its first-ever briefing on palliative care. Through a joint presentation Members were informed of the need for pain relief for the dying (young and old) so as to ensure dignity and humanity in death. The presenters argued that palliative care should be Government’s responsibility. They proposed that public hearings be held, policies be refined and that morphine should be made more accessible for use in palliative care. One of the major concerns related to the fact that while policy made clear mention of palliative care, this service was not supported by national or provincial health budgets.
Members raised concerns around the possibility of morphine addiction, why morphine syrup was not available more widely, equity in terms of urban and rural access to palliative care and the possible duplication of functions between hospices, home-based care, community health care and palliative care. Members also queried the involvement of step-down facilities, the relationship of the organizations with the Department of Health, the functions of provincial co coordinators and District Aids Councils, the recognition of nurse clinicians and inclusion of palliative care in training, funding and whether patients who were discharged because hospitals could do no more for them were automatically referred to hospices. Members commented that they had found the presentations insightful and the Chairperson proposed that the Committee should interact with the DOH’s policies, strategic plans and policies to see how palliative care was provided for. He believed that the Committee should advocate for mainstreaming without duplication of roles. Each sector would have to play its role. He agreed that there was a need for a policy document but that knowledge should in the meantime be spread and services should be delivered. The Committee would also consider the relevant legislation in order to ensure that all disciplines were integrated.
The Committee noted that it would shortly receive a briefing on the tuberculosis crisis in KwaZulu Natal, and consider developments following on the International Aids Conference that was held in Toronto.
Palliative care in South Africa: Joint presentation by Wits Palliative Care, the Hospice and Palliative Care Association and the Palliative Care Association of South Africa.
The Chairperson was pleased that the Committee would, for the first time, be receiving information from the Hospice Palliative Care Association of South Africa (HPCA). He thanked all presenters for initiating the meeting. He felt that, considering the challenges facing the health care sector, palliative care would be central in facilitating dignified death. Palliative care practitioners were excellent at giving empathy and comfort at the most needy times when perhaps all other things might have failed. He hoped that further interactions would follow this, facilitating a broader understanding of the sector. He looked forward to the possibility of joint advocacy programmes that would create awareness of humanitarian aspects.
Dr Natalya Dinat (Director of Wits Palliative Care, at Chris Hani Baragwanath Hospital) led the delegation which consisted of Sister Zodwa Sithole (Palliative nurse clinician from Kwa-Zulu Natal), Ms Joan Marston (Advocacy Officer: Hospice and Palliative Care Association (HPCA)) and Dr Alan Barnard (Chairperson Palliative Care Association of South Africa (PCSSA))
The delegation briefed the Committee on the need for and the Government’s responsibility in caring for the dying so as to ensure dignity in death. Palliative care was necessary to address the feelings of helplessness in home based carers, when faced with the pain and agony often associated with death, as well as to stem the growing feminisation of poverty. The presentation detailed the need to have strong government policies that addressed issues around palliative care and a translation of those policies into action. The presenters advocated the use of local innovations, the essential drugs lists and community partnerships to ensure awareness and equity in access to palliative care.
Ms M Malumise (ANC) admitted that she was one of the people who had thought that palliative care was nothing more than euthanasia. After having heard the presentation she thought differently and wondered whether palliative care could not delivered in some of the DOH’s step-down facilities.
Ms Joan Marston (Advocacy Officer: Hospice and Palliative Care Association (HPCA)) agreed that such an arrangement would be ideal. The HPCA believed that palliative care was a ‘step up’ rather than a ‘step down’ in terms of care and believed that the quality of life in step-down facilities would be greatly improved with the integration of palliative care. She pointed out that in a number of provinces hospices were working together with the step-down facilities in order to assist in relieving the pain of dying.
Dr Dinat added that when a person was dying of a very serious illness then care often needed to be provided in many different settings, such as hospitals, day-centres and homes. Palliative care needed to be provided at all the different levels of the health system. She said that such care could mostly be done at community level and if the step-down facilities had palliative knowledge they could become palliative facilities. Such an approach worked very well in the Free State and some other areas. A concerted policy indicating that step-down facilities should have palliative care in place was needed because there had to be a means by which to address how people died.
Ms M Manana (ANC) said that in her understanding palliative care should fall under the policy governing step-down facilities. She knew that each and every province had to have a step-down facility.
The Chairperson requested the presenters to explain why they believed that palliative care was not synonymous with home-based or step-down care.
Dr Barnard explained that palliative care played an empowering role within the DOH’s strategic plan. Excellent palliative care should aim to develop skills, knowledge and competency. He said that step-down care could be interpreted as care that was of low cost to the state, while the presentation had shown that palliative care, when facilitated within communities, was more cost effective than step down facilities hade been.
Palliative care professionals were a little sensitive about the word “step-down” because it could be taken to imply a lower quality of care, despite the fact that this was not the intention of the word or the strategic framework. All palliative care practitioners would like to provide excellent, high quality palliative care to each and every person who required it. He pointed out that the drivers of palliative care had often been very powerful people such as Dame Cecily Saunders, who championed the cause in the UK, and Greta Schoeman and Christine Dare, who started the first hospice in South Africa. Strong people had been involved in delivery of the care, including palliative care societies that were the academic hub of palliative care, who were able to integrate service delivery from the ground and into the strategic plan. He emphasised that cooperation would be key in getting people cared for, whether in their homes, hospitals, hospices or step-down facilities.
Dr Dinat explained that palliative care was about caring for patients’ physical, psychological and spiritual pains. Step-down facilities referred to something totally different. These accommodated people who were dying, as well as those with chronic illnesses. She said that the DOH was very clear that there should be palliative care for people who were dying. Whilst all the policy documents mentioned palliative care it did not enjoy priority. In addition there was no clarity as to where it was catered for in the DOH’s budget. For instance, the Gauteng department of health was not sure whether the budget allocation appeared under chronic care or HIV care. The HPCA pleaded that more attention be paid to providing implementation strategies as well as a detailed palliative care plan.
Ms M Manana (ANC) noted that that the DOH’s strategic plan for 2006/7 indicated that each province should offer palliative care. She wondered what the HPCA’s relationship with the DOH was.
Dr Dinat responded that the palliative care centres fell under the Comprehensive HIV and Aids Care, Management and Treatment Plan for South Africa. There should be a palliative centre in every province and she believed that there was a need for a Departmental centre that would facilitate the provision of palliative care. Ms Marston and she were members of the national Palliative Care Working Group. Wits Palliative Care (WPC) and the Chris Hani Baragwanath palliative care unit fell under the management of the Gauteng DOH. Thus the approach was to either work in partnership with the DOH and the Government as far as service delivery was concerned, or to be part and parcel of Government service delivery.
Ms Manana said that there was a separation between medicines on the primary, secondary and tertiary essential drugs lists (EDL). Morphine was a Schedule 7 drug and she was curious as to whether it could be administered by primary and home-based health care workers.
Dr Dinat confirmed that morphine was available in the primary health care package and should be available in clinics. There were problems around its dosage and indication. Six of the eight palliative drugs that are on the EDL were available at primary level. The HPCA would like to see that there was input into the EDL so that indications and dosages could be made more appropriate for palliative care. She realised that many clinics were understaffed and under educated and did not stock schedule 7 drugs. She had seen them being used by clinics in Limpopo and the Northern Cape. She added that morphine was available in a syrup form and that having it registered as a short acting tablet would make it easier to get pain relief to people. There should be more advocacy around the matter so that a pharmaceutical company might register it as such.
Mr G Morgan (DA) wondered whether the presenters knew what percentage of people should have received palliative care in the last year but had no access to it.
Dr Dinat said that in 2005 there were just over 578 000 deaths. About 60% of these deaths should have had palliative care. One estimate indicated that the WPC’s reach was about 5%. This illustrated the major concerns that while there were many visits by palliative care nurses, they could not achieve the expected reach.
There was also inequity in terms of rural and urban patients. One of the problems of having this service entirely provided by non-governmental organizations (NGOs) without the support of Government was that in poor areas the poor often ended up caring for the destitute. The St Luke’s Hospice in Cape Town was a lovely facility because it was supported by a wealthy community. By contrast, there was a hospice in a poor area that was housed in a leaky container, because that community was too poor to provide a better facility. If Government gave leadership and partnership to the HPCA equity in terms of access would be achieved.
Ms Marston added that HPCA had 75 member hospices that catered for around 30 000 patients. Increasing numbers of the facilities were situated in rural areas. There were development teams in all the provinces that coordinated palliative care workers and worked with the hospices to help emerging NGOs, faith-based organizations (FBO), and community-based organizations (CBO) to develop palliative care programmes. The HPCA was starting to reach a fair number of people although she admitted that it was not nearly enough. There was still a need to get into more deep rural areas.
Dr Ruth Rabinowitz (IFP) sought more information on how the provincial coordinators functioned.
Ms Marston responded that provincial coordinators were appointed by and accountable to the HPCA. They had only been in the provinces for about two years and worked with expertise from the different hospices. If development programmes needed assistance with fund raising, management or patient care a coordinator would facilitate such assistance.
Dr Dinat felt that public hearings on issues related to palliative care would be a good idea. If the Government played a greater role and showed greater leadership and stewardship the accountability of palliative care facilities would move closer towards government standards in palliative care. It would mean that the government would have a greater say in what was done and palliative care would be brought into mainstream health services. There had to be greater partnership, greater accountability and a better working relationship with the public health services.
Dr Rabinowitz wondered what status nurse clinicians enjoyed. She was also curious whether hospitals were becoming financially self sufficient enough for the funds for palliative care to come from their own budgets.
Dr Dinat responded that there were not enough nurse clinicians and that palliative nurses were not accredited with the South African Nursing Council. The HPCA was trying to work towards getting the palliative nurses recognised. WPC’s approach was that every health care worker had to have a basic knowledge of pain and symptom control in addition to their expertise in other fields. WPC had recently completed training in prisons, which was aimed at providing general nurses with palliative knowledge. There was a need to recognise the status of palliative nurse clinicians as well as palliative qualifications.
She explained that the budgetary constraints at hospitals remained a challenge. The DOH said that hospitals could make allocations from the budgets but hospitals felt that they did not have enough funds to provide palliative care, which was new and had never required an allocation before. Issues around staffing norms and how to manage the services had also not yet been resolved. Academics were producing papers for discussion and had developed district palliative care services. They had also produced a policy discussion paper that looked at how to configure palliative care services in the most cost effective and efficient manner. In theory hospitals had the power to allocate funds but needed some support and guidance from the national department so that new posts could be created. Gauteng province was very supportive of palliative care but could not create new posts because they were not given the funding and the support to do that.
Dr Rabinowitz thought that palliative care workers did heroic work, and that the presentation had made it clear that the value of palliative care lay “soothing the unbearable pain of dying”. She was worried that the good initiative might be lost in academic discussion around policy. The presenters had said that the provision of palliative care was straightforward and so she wondered whether it would still be necessary to go through the whole process of public hearings with more academia, more policies and more statements about an issue that was really serious and needed to be addressed.
Dr Dinat affirmed that providing palliative care was simple and able to be done. The policies were there, but needed to be fleshed out and priorities set. The general pubic, the policy makers and the politicians needed to have a depth of understanding as to what palliative care was about. This current presentation was the first step towards spreading such knowledge.
Dr Barnard said that he too shuddered at the thought of academics taking two to three years to write policy. He pointed out that this was not the intention. The care was being delivered and would continue to be delivered. Palliative care professionals merely wanted to see development of the good policies that were already in place. They also wanted to write better policies so that when sufficient nurse clinicians were available they could be trained and empowered to carry, dispense and prescribe drugs without having to refer to a doctor. He added that morphine attracted some attention, but the suggestions made in respect of morphine applied to some other drugs too. He said that many patients were fearful of morphine because they regarded it as an indication that they were close to death. He had introduced a discussion around morphine early in an ordinary interaction with the patient, well before the disease reached the incurable stage. Public hearings would be “the national conversation about morphine”. Academics also had a responsibility to ensure that the framework for the delivery of morphine was strong and that loopholes were closed. He emphasised that care would continue being delivered but that in the meantime the HPCA would like to be involved with government to develop a policy to explore palliative care.
Dr Rabinowitz wondered why it was necessary to have morphine available in a tablet and not a liquid form. She added that if morphine became more readily available there would be associated problems such as theft in clinics, addiction and the lack of control in facilities. She urged the presenters to remember the reasons government had implemented those controls in the first place.
Dr Dinat explained that morphine syrup’s fridge life posed a problem, and that there was a lot of wastage in the pouring of the drug. In a tablet form it would be much easier to count and account for, and much easier to get out into the homes and into remote areas. She pointed out that cancer patients did not become addicted to morphine. There had been no increase in addiction to morphine in those areas of the world where access had been increased and it was used in a controlled way for pain relief. Family members of patients were also not abusing it. In Soweto patients were very careful and the families returned the morphine after the patient passed away. Her experience was that people treated the drug with the respect it deserved and she did not think that there would be a large morphine addiction problem.
She cautioned that morphine, as was the case with any other drug, needed to be accounted for. It was a schedule 7 drug and had the potential for abuse, and therefore all the necessary precautions must be taken. The possibility for abuse was not an insurmountable obstacle and was not a reason for it not being used in the rural areas. WPC had been working with all kinds of information systems that made accounting for morphine very easy. Dr Barnard added that Dr Rabinowitz’s concerns around regulations and proper security were well founded. He assured her that those delivering the service were particularly careful to follow the correct procedures.
Mr A Madella (ANC) wondered where the hospices received their funding. He had the sense that the funds were generated privately and did not come from the government. He was also interested in how the HPCA managed its member hospices and whether there was a set of rules and regulations that all members needed to adhere to. He noted that only ten of the hospices were accredited and wondered what process was in place to ensure that the 60 and more would also be accredited.
Ms Marston said that, in conjunction with the Council of Health Services Accreditation of South Africa, a set of standards governing the hospices had been developed. There were minimum standards for becoming a member of the HPCA and the association helped organizations in meeting those standards. Members had to be prepared to become part of the accreditation programme and to continually improve and develop all aspects of care, management, governance, fundraising and financial control. The HPCA required these quality standards to protect the patient because palliative care was about quality of care and quality of life for their patients.
Mr Madella expressed concern about the hospices’ guidelines in terms of affordability and accessibility. He wondered whether WPC’s small 5% reach had anything to do with issues of affordability. He spoke of a hospice in Elsies River that had required a R100 weekly fee a scant three weeks after the patient was admitted. This was a large amount of money to those who had no income. He was impressed by the presentation and requested the presenters to forward any discussion papers to the Committee.
Ms Marston responded that each organisation that was a member of HPCA generated its own funds. Many of the organisations received funding from the DOH, the Department of Social Development and sometimes from the Department of Education, who helped with some of their training. Some members used facilities that were owned by the government. Most of the funding came from businesses, corporates, trusts or individuals whose lives had been touched by a particular palliative care programme. Funding was the one big uncertainty for all NGOs and they grappled with the question of how to maintain their services when they received just one annual amount from their different sources. Even government funding came on an annual basis.
She explained that not all hospices belonged to the HPCA and the Elsies River hospital mentioned was not a member hospice of HPCA. Hospices might charge a fee if the patient’s medical aid was functioning, but in general they did not charge anything for their services. She explained that invariably by the time patients came to a hospice their medical aid would already have been exhausted.
Hospices invited families to assist in the form of donations either of money, assistance with fund raising projects, or physical help around the facility. She echoed Dr Dinat’s remark that palliative care was a cost effective service with nearly all of the service being delivered within the patient’s home. The HPCA discouraged members from having in-patient units because they were expensive and took people away from their communities. She added that once a patient was admitted into the unit the quality of the care they received was usually very high.
Sister Sithole said that 99% of the work her organisation did was based within communities where the majority of the patients could not afford medical aid. Her organisation was not getting any money from the patients. Patients were admitted to the programme regardless of their ability to pay. She pointed out that very few people in the rural areas had medical aid. She cautioned that there were many organisations that called themselves hospices that still charged patients.
Dr Dinat said that it was important for patients to know that if they went to a hospice in South Africa or received palliative care from an organisation calling itself a hospice and that hospice was a member of HPCA it was accredited according to national standards and recognised by the DOH. The HPCA could not speak for any other organizations as far as the standard of care was concerned.
WPC was slightly different. Originally it was 100% funded by the Irish Government and had the intention of setting up palliative services where these had not previously existed within the public health sector. They were 100% funded by donors in 2002, but were currently 100% government-funded organisation today. Their intention was always to develop public sector capacity. They did however get other funds for research and training activities.
Dr Dinat was often asked whether individuals or the State had the responsibility of taking care of the dying. She firmly believed, and was supported in this by Government, the Constitution and the DOH, that the responsibility fell on Government.
Funding could be allocated directly to the public sector which was very well developed in South Africa, or government could pay the hospice to deliver the care and contract out the service. Palliative care professionals asked that the stewardship, the standards, and the policy and drugs must be developed and paid for by government. This would ensure that that the poorest of the poor would access good pain and symptom relief. This would avoid the parallel system for the dying, outside of the health system, that resulted in the duplication of services and wasting of money. Access to service would then become more equitable.
Dr Dinat explained that internationally hospices had started off in the NGO sector. In the UK they moved from being 100% donor funded to being partly funded by funds raised by communities and government. She said that just as the government, as a basic right, should provide good maternal heath care, palliative care too was the responsibility of government. The organisations would welcome engagement and debate with all sectors of the public.
Ms F Batyi (ID) said that her sister had been diagnosed with stomach cancer. The doctors at Groote Schuur said that there was nothing they could do for her and discharged her. She wondered whether there was a referral system between the hospitals and the HPCA.
Dr Dinat responded that referrals happened on a very ad hoc basis. At Chris Hani Baragwanath every single patient who was discharged because nothing more could be done for them was referred to the palliative centre at the hospital. That centre would then make an assessment of the patient. Unfortunately the unit had only five staff members and their services were only delivered in Soweto. Alternative arrangements had to be made for patients from other areas. She said that constituencies could demand a referral service from hospitals and that it was necessary to make sure that palliative care was provided by the health sector. The mission and values of WPC included promoting best practices for palliative care through the public health sector.
Ms M Matsemela (ANC) wondered whether there was any duplication of functions between the different sectors that provided care to those who were terminally ill, and asked what HPCA’s relationship with the different sectors was.
Sister Sithole said that there was no duplication as far as home-based care was concerned. A palliative care component had been introduced in their training. There were centres for palliative care across the country and the training was recognized by the Nursing Council of South Africa. They also networked with the traditional healers and sometimes addressed them around issues of palliative care so that they could refer patients to hospitals.
Dr Barnard said that the HPCA was the main body driving the process on ensuring accountability to funders, who would require good delivery before releasing the next funding. Palliative care professionals worked in the community and everything was community-owned and community-based. They worked with community care workers, with Aids councils and with other structures, so the whole concept was relationship-based.
Dr Dinat explained that there was no duplication. Home-based carers were not health care professionals. If they were retired nurses they were not registered with the South African Nursing Council to become health care professionals. Community health workers had a function in palliative care but they could not substitute for the clinical aspects. This often resulted in people having access to good home-based care but not to the drugs which were absolutely key in providing good palliative care. Dr Dinat, paraphrasing British palliative care Doctor Sheila Cassidy, said that the dying knew that they could not be cured and that they only asked not to be deserted. The mere fact that they knew they were not dying alone helped a great deal; the knowledge that medical professionals cared enough to help made those dying feel like valued human beings.
A member commented that if morphine and other Schedule 7 drugs were available in a tablet form, patients would be able to manage their medication easily. She did not think that it would be problematic to come up with regulations that could allow nurses to supply these drugs. She was pleased to hear that HPCA and WPC were eager to work with other sectors and were in favour of cooperation and networking.
The member noted that a terminally ill patient, when discharged, returned home and thus became the family’s responsibility. She agreed that the state had a role to play and that it had to come up with policies, regulations and legislation that would respond to palliative care. She herself had been trained as a nurse and during her training there was always talk of a holistic approach and the physical and curative aspects of health. She now realised that that approach, which excluded care for the dying, was not holistic at all. She wondered whether the association had approached the senates of institutions of higher learning to determine whether they could make provision for palliative care into their curricula.
Dr Dinat explained that WPC did pre-service and in service training. There were discussions with tertiary institutions to facilitate more such training.
Ms Manana said that she was concerned because most of the hospices were run by NGOs. She wondered whether it was possible to allow for the mainstreaming of the service by making it more affordable and accessible. She felt that hospices should be part of the public sector.
Dr Rabinowitz wondered whether the District Aids Councils were running efficiently so that too they could be used as palliative care facilities.
Dr Dinat said that people needed to be trained in palliative care and the regulations also supported it. If money was available the Councils could afford to give palliative care services. She said that in certain areas Aids Councils were running effectively but their functioning needed to be improved.
Ms Marston added that in light of all the different specialties palliative care was very new. These specialties developed in the communities and not in the academic world. Palliative care needed to be mainstreamed to improve accessibility. Chris Hani Baragwanath was a flagship for mainstreaming into the public health sector. She emphasised that partnerships were vital in ensuring mainstreaming.
The Chairperson said that the information the Committee had received that day should inform some of its activities, especially as far as its oversight duties were concerned. The Committee would interact with the DOH’s policies, strategic plans and policies to see how palliative care was provided for. If palliative care was not adequately provided the Committee should try and determine why not. He could not recall that the Department had dealt with palliative care in any previous briefings.
The Chairperson believed that the Committee should advocate for mainstreaming without duplication of roles. He said that people died alone because there was a lack of knowledge of palliative care. He cautioned that everything could not be done by the State and each sector would have to play its role. He agreed that there was a need for a policy document but stressed that while this was being developed knowledge should be spread and services should be delivered. The Committee should also consider the relevant legislation in order to ensure that all disciplines were integrated. Finally he thanked the presenters.
The Chairperson informed members that there had been a delay in the discussion of the Health Professionals Amendment Bill (scheduled for two weeks earlier) because the Bill had not yet been translated into a second official language. The rules of Parliament required that a Bill only be discussed once it had been translated into a second official language. The Department of Health had agreed that the process would be fast-tracked so that discussions could proceed as soon as possible.
The Chairperson also suggested that the Committee should review its programme to allow for a briefing on the extreme drug-resistant tuberculosis crisis in Tugela Ferry (KwaZulu Natal). The DOH and possibly also the Medical Research Council (MRC) should be requested to brief the Committee on possible strategies to contain and manage the virus. He noted that the Committee would also need to be briefed on the recent International Aids Conference that was held in Toronto, so Members could consider the developments and the strategies around HIV and Aids that followed the conference. He would try to facilitate both these processes.
The meeting was adjourned.
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