Monday 13 September Welcome, Introductions and Purpose of meeting

Transcription

1 Monday 13 September 2010 Welcome, Introductions and Purpose of meeting Welcome Professor Derek Hellenberg (University of Cape Town, South Africa) Prof Hellenberg began by welcoming the delegates to the first international primary palliative care research forum in Africa. He commended the work of the palliative care department at the University of Cape Town (UCT), which was started by Dr Liz Gwyther in One of the major achievements of this department has been the inclusion of palliative care in the UCT undergraduate medical curriculum. Prof Hellenberg also commended Dr Barnard for his work in organising the conference. He then declared the conference open. Introductions Dr Alan Barnard (South Africa) Dr Barnard welcomed all the delegates to South Africa and to the conference, giving special acknowledgement to those who had travelled from outside the country to be at the conference. He suggested that all the South African delegates regard themselves as the conference welcoming committee and especially to be helpful and welcoming to all the visitors from other parts of Africa and other continents. Dr Barnard discussed the link between primary health care and palliative care, and stressed the importance of applying palliative care principles at a primary care level. He then took the opportunity to welcome the newly appointed Head of the Primary Health Care Directorate, Professor Steve Reid, suggesting that there are many opportunities for collaboration in education and research. Purpose of meeting Dr Alan Barnard and Dr Liz Gwyther We wish to build a community of practice which learns together and is mutually encouraging; to develop the network of primary palliative care researchers and foster collaboration in research, teaching, advocacy and primary palliative care practice. The purpose of this meeting is to promote collaboration, networking, learning from each other, and growing the footprint of the work currently being done. The International Primary Palliative

2 Care Research Group (IPPCRG) serves as an excellent example of this. What began as a number of isolated primary palliative care practitioners in different parts of the world, is increasingly becoming a space where people come together to advocate for good quality palliative care in a primary care setting. The IPPCRG also provides access to web based resources and facilitates large scale networking. Workshop Session The Research Process Conception to application This workshop style session was aimed at those members of the audience who have the intention of being involved in research, but find that there are barriers to that process. The research process from choice of topic and refining the question, to ensuring local relevance, to the obtaining of support and finally the value of collaboration was explored. Choosing research topics Professor Scott Murray (Scotland) Professor Scott Murray characterised palliative care as being about caring for all at the end of life. He then outlined what he believes are the key challenges facing palliative care in the next ten years. An African theme of The Big Five helped us to focus on the important themes in Africa, though these are important in other locations too. These five key areas are: 1) Palliative care is applicable for all illnesses 2) Care should begin earlier than later 3) All dimensions require attention 4) Palliative care must be accessible to all nations 5) This approach should be practiced in all settings Palliative care can be seen to occupy three levels of care: the palliative care approach is applicable by every carer to every patient in every situation; primary palliative care is provided for patients who are at the end of life, especially at primary care level; and specialist palliative care is required by many patients who have severe symptoms, or difficult problems requiring hospice or similar care. The palliative care approach should become a widely practiced approach to health care and be applicable to all illnesses, for example, in Africa, palliative care should go beyond HIV/AIDS and in more developed countries, like the United Kingdom, palliative care should go beyond cancer. Palliative care has historically focused mainly on cancer in the developed world including the United Kingdom, Canada and Australia. The burden of need for palliative care in these countries, however, is multi morbidity and frailty. Professor Murray presented interesting slides demonstrating the trajectory of illness in cancer, organ failure and multi morbidity, illustrating the progression of the physical, social, psychological and

3 spiritual trajectories. The trajectory of HIV/AIDS was also discussed, and fitted most closely with the organ failure model. Discussion of the five challenges proceeded as follows: 1. ALL ILLNESSES It was evident from the presentation and discussion that the audience was in agreement with this approach, but advocacy amongst our medical colleagues would permit wider acceptance of this view 2. EARLIER THAN LATER (When is a patient considered to be suitable for palliative care?) We know, from the literature, that palliative care extends life, so we need to know when to apply the palliative care approach. The surprise question of Dr Joanne Lynne should be applied to every patient situation, to help to bring the need into clear focus. Ask, Would you be surprised if Mr/s A were to die in the next 12 months? 3. ALL DIMENSIONS (How do we understand distress?) Competent palliative care pays attention to the physical, psychological, social and spiritual dimensions of the person, which change as time passes. An understanding of the trajectories of these dimensions facilitates better palliative care. The trajectory graph of physical and social decline is similar (Journal of Pain and Symptom Management 2007). The psychological trajectory is cyclical and the spiritual one is similar. The trajectories of the carers match the patients, with physical decline being less marked. Palliative care is needed by all people suffering from life threatening illness across all boundaries: national borders, ethnic divisions, socio economic status, religious affiliation and any other real or perceived barrier to care. 4. ALL NATIONS Palliative care is needed by all people suffering from life threatening illness across all boundaries: national borders, ethnic divisions, socio economic status, religious affiliation and any other real or perceived barrier to care. 5. ALL SETTINGS Palliative care needs to reach the people who need it where they access care, including primary care, hospitals, community services other than medical care like NGOs and faith based organisations; and also specialist palliative care services, like hospices. Academic palliative care, that is to say, the university based teaching and research in palliative care should develop programmes to ensure the broad availability of skills and services. ( palliative care should be in the community decided by governments and funders who have no money for hospitals!) The possible activities of th group were suggested along a continuum of: Research + Teaching + Clinical Work + Advocacy + Policy

4 Some thoughts about publication and target audiences were shared, and the objective of the message and the particular journal in which it should be placed should be chosen carefully so that the readers will receive the message and be influenced by it. E.g. publishing in Palliative Medicine may not be the best target for a primary palliative care article as the audience is predominantly specialist palliative care. Some lively discussion followed, directed and developed by Prof Murray. The concept that palliative care is a movement was raised and discussed. Making the Big Questions relevant in every location. Professor Geoff Mitchell (Australia) Professor Mitchell tackled the issue of making research contextually relevant, which followed on very smoothly from the previous presentation. He reinforced Prof Murray s 5 key areas in palliative care research, and then went on to explore how to apply these broader principles to narrower, more focused research. He emphasised the importance of knowing the local community, particularly in terms of disease profile, local attitudes and beliefs around illness and health, and the services available in the local health system. These contextual factors must necessarily inform meaningful research. In order to illustrate his point, he used Australia as a case study, and looked at demographics, a diverse range of health beliefs, and the main challenges to the health system. A number of interesting barriers to providing palliative care emerged, and he went on to discuss some of the ways he and his team have sought to combat them in the local setting of Ipswich Community Hospice, Queensland. The main challenges included encouragement of clinicians to engage earlier with palliative care, developing models of integrated care for a wide range of settings, finding innovative ways to engage GPs in the palliative process and systematic identification of all patients in need of palliative care. Solutions included the development of consensus based guidelines, teleconferenced case discussions between GPs and specialist teams and patient held record cards. He also discussed an intervention around caring for caregivers. Throughout the presentation, Prof Mitchell addressed the person practicing palliative care. He concluded by encouraging all present to start local, to start small, and reminded delegates that improving palliative care is a lifelong task. Can anybody help me? Professor Fred Burge (Canada) Professor Burge conducted a workshop to explore the support of research and researchers. His scope included support from the conception of the research idea, to the publication of the article and beyond, support in terms of mentoring and peer encouragement, study design, ethics approval, data gathering, analysis, writing and publication/dissemination, and material support in terms of time and money. He began his session by introducing himself and his home: Nova Scotia, Canada. Shortly thereafter, the group was asked to brainstorm a research question. Some proposals were: What is the experience of the patient of palliative care in the primary care setting? How can we identify the factors that can improve quality of care in rural pain management compared to pain management within the city?

5 Prof Burge then asked delegates to think about who would help to clarify these questions, and guided them through the process of developing an effective research question. The next steps involved recruiting a research team and developing the research methodology, including study design, sampling, measurement and analysis. He emphasised the importance of dissemination of research, of translating knowledge into practice. In the next part of the session, he discussed his work with the Network for End of Life Studies (NELS) and Interdisciplinary Capacity Enhancement (ICE). NELS is a long term series of projects by Halifax based researchers investigating end of life care. He argued that an overarching complex question is a prerequisite for interdisciplinary study, and that for NELS ICE, this question is: How can equity be achieved in the provision of quality care for persons living with life threatening chronic disease? To answer this question, the following goals were developed: 1. Create an interdisciplinary team of researchers, trainees, health professionals, and community partners 2. Develop surveillance system to identify vulnerable populations at end of life that include cancer and other chronic diseases: COPD, CHF, diabetes, renal disease, etc. 3. Design and conduct pilot studies 4. Engage in knowledge translation A large number of collaborators have been recruited, a large variety of methods are employed, and an impressive list of accomplishments was displayed. Facilitating collaboration in research Dr Alan Barnard and Professor Bart van den Eynden The process of collaboration in research was discussed with a view to creating an awareness of the benefits and opportunities of this aspect of research in primary palliative care. The fact that the topics and methods of research overlap lends itself to collaboration. A brief presentation on the benefits of and reasons for collaboration followed, with improvements in quality, future output and self organisation being highlighted. Professor van den Eynden presented an overview await info (power point not accessible now) A facilitated group discussion followed using the SOCKS acronym: (this discussion tool was first seen by the author at a FAIMER (Foundation for the Advancement of Medical Education and Research) workshop conducted by Prof David Cameron from Pretoria University.) S O C K S Strengths Opportunities Challenges Knowledge Stakeholders.

6 The delegates were divided into five groups of about ten people and asked to discuss collaboration under the headings above. Each group returned three main points in the report back session. Strengths: What strong factors have you seen in collaborations, that may predict success? E.g Personalities, accountability, support, financial? A diversity of: 1. human resources 2. physical resources (multiple funders) 3. accountability Opportunities: Where do you have the chance to consider collaboration in research? With whom? 1. Alumni Link 2. Technology ( internet, Skype etc) 3. Structure we all have patients industry looking for key experts umbrella networks of hospices Challenges: What are the barriers to undertaking collaborative projects? 1. Identify barriers (culture, language, expectations, context, different systems and settings) 2. communication to facilitate discussion 3. reach consensus An atmosphere of trust, honesty and with an ethical thread without competition is best. Knowledge: What particular attribute, knowledge and or skill is needed to make collaboration successful? Stakeholders: Who are the people, organisations, backers who will support or benefit from these collaborations? 1. networking 2. staff awareness ( strengths and weaknesses, sensitivity) 3. group dynamics ( areas and resources) Stakeholders 1. Planners funders, government (local provincial, national), universities, policy makers e.g. WHO 2. Users / Beneficiaries patients, families, students 3. Providers and Service Deliverers nurses, community workers

7 The following set of questions were posed to the audience to encourage future collaborative endeavour: 1. What are you collaborative ventures? 2. How did they arise? 3. Do they serve to improve quality? 4. Is scientific endeavour promoted? 5. Does novel scientific progress arise naturally form these groups? How can we make this work in South Africa? Dr Liz Gwyther Dr Liz Gwyther presented a response to the opportunities that the morning session had presented. The particular local aspects which she highlighted are listed below: Palliative care is very young in South Africa We must remember that palliative care research is primarily for the benefit of patients and their families Evidence based practice is the goal of research Multidisciplinary team work can sometimes paradoxically be lonely Palliative care in the South African context of sharing communities. It is very important to have an attitude of sharing from the outset. This will influence how we do research. The delegates were encouraged to share what we are doing and then to adapt it to African or other contexts Careful task shifting is needed to ensure broader accessibility of excellent quality of care for the patients Incredible passionate and dedicated people are involved Fortunate position at UCT can combine teaching and research Need to be aware of the context of communities We need patience the conversion of new knowledge (from research evidence) to practice takes 17 YEARS! Integrating palliative care into everyday practice is a priority In South Africa we ask questions such as how has HIV shaped palliative care? We need to look at palliative care in different settings: home based hospice care hospital care Make sure that palliative care becomes part of every heath care workers training and practice. There is an extensive research agenda for palliative care in South Africa.

8 RESEARCH PRESENTATIONS A journey with the dying: How general practitioners experience the death of their patients. Sofia C. Zambrano Ramos (PhD Candidate, Adelaide University, Australia) The important aspect of doctors emotions is the subject of the next presentation which is a very important field due to the intensive exposure of doctors to death, and the paucity of research in the literature covering this topic. The relevance cannot be overstated, as the practice of any doctors will be affected by previous experience, and this experience has not hitherto been examined and published. There are important implications for medical education in these research findings. Rigorous qualitative methods and robust analysis revealed a trajectory of response encompassing anticipatory grief, stages of progress and emotional reactions. These were moderated by contributory factors e.g. the death beliefs of the doctor, and finally resulted in coping mechanisms, from talking with colleagues to the use of more alcohol than usual. The doctor s relationship with death is part of a continuum, with implications for teaching, grieving and self care. The presentation ended with some very powerful quotes from the interviews which were conducted in the data gathering stage of the research, two of which are repeated below. There is nothing worse than looking at that result and seeing that that person has something incurable and that you are going to need to go and convey that to them. You feel like you are a really bad person, this terrible person that is going to tell them that they have got something incurable. It is a really horrible thing that you have to do. (GP 9, female, age 30) I think it is the biggest privilege for doctors to walk with their patients through the death journey, especially if you have been looking after them for a long time... (GP 2, female, age 56) Palliative care needs assessment in a national referral hospital setting. Dr Elizabeth Namukwaya (Registrar in Palliative Care, Makerere University and Mulago Hospital, Kampala, Uganda) The results of a survey to establish the need for palliative care in patients at Mulago hospital, the national referral hospital in Uganda are presented. This was done to provide baseline data on the prevalence of life limiting disease and the palliative care needs of the patients for the purpose of future planning and research. The results showed that 45% of the patients had life limiting illness, but only 5% were know to the palliative care service. HIV and cancer comprised 80% of the diagnoses in these patients, with 20% being solid organ failure. The symptom burden was as expected, but despite 75% having pain, only 3% were on morphine. In respect of psychological and spiritual support, 60% reported enough spiritual support, but on 45% described themselves to be at peace. The high need and low utilization needs to be addressed with education of both patients and medical

9 staff. The need for psychosocial support is clear with appropriate referral systems. An Assessment of Abundant Life, Victoria Hospital s Palliative Care Program for Organ Failure and Frail Patients. Dr Clint Cupido, Head of Internal Medicine, Victoria Hospital, Wynberg, Cape Town, South Africa Victoria Hospital is a secondary level hospital and the second oldest in South Africa with a local referral base from surrounding Community Health Centres. Many patients have multiple admissions for various conditions, most commonly multi morbidity and frailty. There is poor systems control and no long term management. Patients are often managed on an ad hoc basis. The 2007 mortality statistics of the hospital showed that 50% of hospital deaths were predictable and hospital death could possibly have been avoided. A public hospital palliative care programme was established against some resistance with the goal of improving quality of care and saving costs. The Surprise Question approach of Joanne Lynn was applied to recruit patient for the programme, which comprised a 4 session intervention (education, functional activities, nutrition and evaluation) in the outpatient clinic. There were wide benefits to the patients, relatives and hospital staff and also to the hospital service. There were reduced hospital admissions and cost savings. There was a measurable improvement in the quality of care, and all who expressed a desire for a home death did achieve this objective. A comparison of patient enrolled in the programme with those not enrolled showed a cost saving per patient over three months of R2131. Home deaths increased form 20% to 60%. Family support was also very much improved. The programme has been well accepted and it is hope to extend and develop the model of care to more patients. Closing the gap: the research agenda for Paediatric Palliative Care in Sub Saharan Africa. Dr Michelle Meiring, Paediatrician, UCT Palliative Care Programme. Adult palliative care services cannot meet all paediatric palliative care needs, and in the UK the first paediatric hospice Helen House was established in This has developed widely since then. The need in South Africa is great, and hospital palliative care centres have been established. A centre of excellence is Red Cross Children s Hospital in Cape Town. There are different priorities in paediatric palliative care, so the research agenda is allied to, but different form the adult palliative care agenda. Assessing the need for Spiritual care and evaluating the usefulness of a spiritual assessment tool in a multicultural population of patients with life threatening illnesses in South Africa. Dr Charmaine Blanchard, General Practitioner with a special interest in palliative care, Johannesburg, South Africa. The results of this research were presented, and are being written up for publication at present.

10 Academic Palliative Care in Africa Invited speakers, from three Universities in Africa addressed the question: What is the state of academic palliative care in your environment, and how can it be fostered to encourage primary palliative care research? University of the Witwatersrand, South Africa Dr Lindsay Farrant Palliative Care Research at the University of the Witswaterstrand Dr Farrant gave a brief history into the integration of palliative care in the curriculum medical students at the university in 2005, together with the graduate entry medical programme. Palliative Care is currently a division in the department of Internal Medicine, working with undergraduate and postgraduate teaching, as well as research and clinical practice.. Their palliative care centers have been identified as centres of excellence by the Gauteng province department of health. They work by their motto Adding life to days, not just days to life which work towards their vision to promote best practice equitable and appropriate palliative care in the public health sector. Research priorities: 1. What is the burden of disease in our setting and what are the future trends? HIV/AIDS, Cancer, Heart Disease? 2. What are the various service configurations, staffing norms which are appropriate for South Africa? is nurse led service effective? Is outreach feasible and how much does it cost? What is our role with the cancer services? Palliative approach vs Specialist Palliative Care Services? 3. Is it good to integrate into health systems? 4. Clinical guidelines What is the evidence and how appropriate is it in our setting? 5. What kind of teaching and training is required? Specific areas we identified within these areas 1. What is the need of the community we serve? 2. Service evaluation and cost analysis 3. Integrating a palliative approach into primary health care and the role of specialist services 4. TB 5. Pain and symptoms in HIV, especially neuropathic pain because it is common 6. Increasing access to morphine nurse prescribing 7. Evaluation of teaching and training at Wits Lessons learnt A lot of luck, hard work, it takes money to find money. Can do high quality research in Africa, and we can do RCTs.

11 We are so busy doing the palliative care building the ship as we sail that we have put aside little time and resources to write up. Need to actively seek the mentorship & do research & write up. Need to be able to read and discuss an academic community. Research done Identifying need The Soweto Care Givers forum and community involvement in care of the dying. Health Systems Trust Paper Indian Journal of Palliative Care. Found that the health utility model of community involvement (home based care) is not effective and the use of the unemployed as volunteers is perceived as exploitation. Living with HIV and dying in a time of AIDS. PEPFAR Published by Lambert Academic Publishers. A qualitative piece of work which identified the main needs of people when they are dying. Main finding that patients do not want to dwell on death, so do not want to talk about it. Morphine Gap in South Africa. Unpublished. Found a big gap between use and need. Evaluation of services Developing and validating a palliative outcomes tool. Encompass collaboration. International collaboration. Published and well described. Impacted on policy led to the creation of the first fully integrated public sector Specialist Palliative Care Service in South Africa. Now 24 fully funded DOH posts for service delivery. Presented to the National Dept of Health Management Committee of all Chief Directors and Directors General for Health. Generated some interest, but no money! Centre for Health Policy studies looked at burn out of nursing staff. Palliative Care was shown to have the lowest level of burnout in the hospital. Conference presentation, not yet published. Evaluation of palliative care Cost analysis Collaboration with a health economist. In press JPSM. Found that, consistent with findings over much of the world, our outreach services are cost saving. Impacted hugely on facility managers and chief financial officers (particularly at Bara) and led to the sustainability of the centre Standards of care. Based on service evaluation and clinical audit. Requested by the National Dept of Health, Office of Standards and Compliance. Evaluation of a Palliative Care Service. A large data set spanning 5 years with ethical approval and individual patient consent. Ongoing MPH Predictors of pain management outcomes. Ongoing MPH Analysis of POS in Palliative Care. Ongoing Functional decline at the end of life in HIV/AIDS. The big lessons learnt concluded with the statement that peer reviewed publications are important, but government meetings can be very influential.

12 State of Academic Palliative Care at Makerere University Dr Mhoira Leng, Makerere University, Uganda In providing palliative care services and consultation, Dr Leng asked How do we not disempower our colleagues? Makerere University s palliative care unit is based in the department of internal medicine. The question of the right models of delivery for palliative care in this setting is important especially as it is difficult to influence systems. Advocacy and the increasing credibility of palliative care is another goal. Clinical service The university offers training in palliative care at an undergraduate and post graduate level. A distance learning, competency based BSc in palliative care is offered in collaboration with Hospice Africa, Uganda and APCA (African Palliative Care Association). There is palliative care training offered to the MMed programme of the university and speciality training. The palliative care unit has a role to support and initiate research and has local and international programmes. There have been capacity building master classes and a strong collaboration between Makerere, Edinburgh and Yale universities with the vision to support, develop, deliver and evaluate palliative care in a hospital setting and ensure its integration into the community. Research into patient needs and perspectives, staff needs and perspectives, frameworks for care, and various clinical studies are at differing stages of completion. The teaching medical students is another part of the programme offered with the following observations being made: students respond very well to teaching the process of evaluation is ongoing it s a great start This powerful quote stood out in the presentation: If you are going to challenge values, you have to listen first. University of Cape Town, South Africa Dr Liz Gwyther Dr Liz Gwyther is currently the coordinator of National Education and Research and the Director of the Hospice Palliative Care Association of South Africa (HPCA). Dr Gwyther described the trajectory of her career, from working in Zimbabwe to general practice, hospice volunteer doctor and then specialist training in palliative care. This is a familiar story, as many other dedicated professionals in the field have come to it later in their professional lives, and often

13 through the hospice movement. Academic palliative care, advocacy and management is where she finds herself now, at the head of HPCA and the palliative care programme at UCT. The integration of palliative care training at UCT and curriculum development to include this important field have occupied much time and energy, and the establishment of a masters degree programme in palliative medicine in the family medicine department has ensured that there are more than 100 graduates of that programme in SA and throughout Africa. As part of undergraduate training at UCT, medical students receive training in palliative care during their family medicine rotation and by practical training at one of the hospices in the area. Students also are given the opportunity to complete an elective in palliative medicine. Across all their years in medical school at the University of Cape Town, the students will receive a total of about 46 hours of teaching in palliative care, which is more than any other medical school in the country. Dr Gwyther then discussed that there is great need for research to be done around palliative care in Africa. The results need to be published as only 3% of dissertations actually make it to the publication stage. She then mentioned a number of current studies being done in palliative care that include the following topics: Paediatric palliative care places of care trajectory of the illness holistic care prevalence, community studies Panel Discussion Members of the panel: Dr Mhoria Leng, Dr Liz Gwyther and Dr Lindsay Farrant Topic of discussion How can palliative care be improved? Some lively discussion followed with many contributions from the floor and responses from the panel.

14 DAY 2 Tuesday 14 September 2010 Research presentations Pain in HIV/AIDS patients: University of Ilorin Teaching Hospital Experience Dr Israel Kolawole (Nigeria) Dr Kolawole presented his research on pain in HIV/AIDS patients at the University of Ilorin Teaching Hospital (UITH), Nigeria. The research objectives were to describe the clinical pattern of HIV related pain, and to assess the impact of the pain on patients quality of life. After a brief discussion of methodology and data analysis, he explained a number of important findings. The research found that pain can be a major contributor to the reduction of a person s quality of life and, when severe, can overwhelm all other aspects. A high prevalence (59.4%) of pain in HIV/AIDS patients was found in UITH, and this is consistent with previous reports. Although, the study demonstrated a statistically significant difference (p = 0.00) in the quality of life between those who had pain and those who did not, measures of quality of life are necessarily subjective and variable. Especially with a life limiting, chronic, debilitating and highly stigmatised disease like HIV/AIDS, it is difficult to prove that the observed difference in quality of life in this study was due solely to the presence of pain. Pain is constantly a neglected subject in the care of HIV/AIDS patients in this environment, usually because treatment attention is focused on the disease and the use of antiretroviral drugs. He then outlined the main limitations to his study, which included difficulties navigating the psychosocial problems associated with the disease during the interviews, and research assistants who were not sufficiently committed, possibly as a result of competing duties and lack of remuneration. He concluded that the prevalence of pain in HIV/AIDS patients in UITH is high, and that adequate measures to address pain should be incorporated into the treatment package of all patients with HIV/AIDS. Research in Palliative Care Dr Celia Jameson Dr Jameson introduced the work that she and her team are doing at the Grahamstown Palliative Care Ward. The team includes 2 doctors, 6 professional nurses, 2 social workers, a dietician, a physiotherapist, and an occupational therapist. Theirs is a privately funded initiative, which serves both private and public patients, with a focus on HIV/AIDS and cancer. In the first year it was obvious from ward statistics that the commonest cause of death among HIV patients was tuberculosis. Over the years the profile of the patients dying has changed due to a very intensive programme of investigation and impact on the causes of deaths. A review of the clinical records was undertaken to see what common factors might influence mortality and if any interventions could alter this high mortality. Patient records were reviewed over a number of years to compare rate of mortality, causes of death and how the death rate could be impacted. Research revealed HIV enteropathy, tuberculosis (including drug resistant strains) and Kaposi s sarcoma as the main causes of death. The conventional approach to TB diagnosis is problematic in HIV/AIDS as there is often no sputum, and at a very low CD4 count there is no cellular response to cause changes on x ray, and other features of infection may also be reduced. Pyrexia

15 was seen to develop in TB patients receiving TB and antiretroviral therapy, and may be related to immune reconstitution syndrome (IRIS). A number of other contributing causes of death were outlined, including low CD4 at referral, defaulting treatment, depression and lack of emotional support. The research led to a number of important and relevant findings. Aggressive management of tuberculosis can reduce the number of deaths attributable to the disease. It requires proactive management, with a strong clinical suspicion and early intervention (not waiting for blood tests). Aggressive management of IRIS is vital. HIV enteropathy remains a major problem. There is a need to diagnose and treat at a higher CD4 count. Defaulting patients have a poor prognosis and use up a lot of resources. The death rate has dropped from 57% in 2006 to 21.5% in The presenter concluded by thanking all those involved in making this possible. Once the floor was opened for discussion, Dr Clint Cupido (Victoria Hospital, Wynberg, Cape Town) responded to Dr Jameson s assertion that IRIS was a major cause of morbidity and mortality in the hospital, by highlighting the fact that very few people die as a result of IRIS itself, and that it is essential to continue treatment. Dr Jameson agreed. Patient Support Service, the necessity of managing pain in totality in chronic pain management Ms Christa du Toit Ms Du Toit shared some of her experiences in her many years of critical care nursing, and discussed her research into her patients experience of pain. She highlighted the importance of this subjective experience, over and above an objective definition, and in light of this, had conducted an exploratory descriptive study. She discussed the concept of total pain, which included physical, psychological, social, cultural and spiritual dimensions, and brought these issues to life by sharing some of her patients stories. She emphasised the importance of using creative, alternative ways to manage total pain. She discussed her findings in support group work as a pain management strategy. The themes of the support group were: Pain in totality Internal and external loci of control Humour and pain Outreach Serving others, as a way to manage total pain, was something she found to be particularly transformative. She concluded her presentation by asking the delegates to turn to their neighbours and share hat they each do to spoil themselves, highlighting the importance of individual preference in managing total pain.

16 Dialogue between Palliative Care and Traditional African Healers Dr Nicola Graham Dr Graham presented the research findings from a qualitative study she conducted with a number of traditional African healers in South Africa. The findings are classified onto three themes: The context of being a traditional healer in modern South Africa There is a much more significant diversity in attitudes and beliefs among South African traditional healers than is often expected. Also, many are already collaborating with doctors, nurses and clinics, referring promptly when is it not a spiritual problem. The role of a traditional healer around death and dying It is largely considered bad luck for a traditional healer to be around death. Many cultures require them to undergo complicated rituals to cleanse them of their association with death. The needs of a Xhosa person at the end of life A number of important issues must be managed in order for a good death. The spoken word is paramount, it is a collective affair, and often a special death language is used. When discussing the clinical implications of her research for end of life care of Xhosa patients, she emphasised the important of not making assumptions, and treating patients as unique individuals within very specific contexts. IPPCRG Annual Meeting and Workshop: Building a community of excellent research minded practitioners in primary palliative care The International Primary Palliative Care Research Group (IPPCRG) meets once a year, at a palliative care or general practice conference, to support each other, and promote the work they do. Prof Murray initiated this year s meeting by proposing a broad, open agenda. Items included a review of the group s objectives, a review of the website as a resource and an overview of the state of palliative care in the various countries represented. A number of group objectives were put forward: 1. Advocating for palliative care in the community It was suggested that the group explore the most appropriate models of palliative care in various community settings. Once these have been clarified, it then becomes important to mobilise patients to advocate for palliative care, because often patients want it, but doctors do not refer. Publishing articles and writing letters was suggested as an effective way to advocate for a greater focus on palliative care. Prof Murray promoted a collaborative approach, encouraging delegates to copy and adapt the work that has already been done, making it relevant to the different communities and contexts. Research done in one country may very well be relevant or benefical to another country or group. This work will serve to make other clinicians more aware of palliative care. 2. Supporting and networking with like minded practitioners

17 There was a call for more specialist support to general practitioners who see the value of palliative care, but do not feel they possess the requisite knowledge and skills to practise this effectively. The Gold Standards Framework is an excellent tool for doctors, but needs significant adaptation to be relevant and effective in local contexts. Furthermore, much of primary care is currently provided through nurse led services. 3. Encouraging palliative care research for policy Good quality research is needed to justify the necessary policy reform. Relevant research findings should be condensed and clarified, to convince politicians of the value in proposed reforms. 4. Influencing medical education Palliative care should hold a more prominent position in medical curricula particulary at undergraduate level. All delegates are responsible for developing and influencing their respective institutions. It was also suggested that the IPPCRG s research agenda should be broad enough to include issues around education. 5. Review and alignment of pallative care guidelines The group would also be in the position to compare clinical guidelines from different parts of the world, review them, and ensure alignment. A combined set of guidelines would be an invaluable tool for primary palliative care training. An essential formulary for palliative care was also proposed. The IPPCRG website ( is considered to be a valuable resource in the pursuit of these objectives. Delegates were given a brief overview of the layout and content of the site, and invited to use, update and provide any comments or criticism. Countries represented at this gathering included Belgium, Botswana, Canada, Columbia, Namibia, Nigeria, South Africa, Tanzania, Uganda and Zimbabwe. A number of representatives were given an opportunity to report on the state of palliative care in their setting. Botswana Dr Baron Bartholomew Matonhodze took the opportunity to present his work at Pabalelong Hospice in Botswana, and make a strong appeal for support for this work. His interest in palliative care began when he adopted a very sick HIV positive patient. Shortly after, he registered for a diploma in palliative care at the University of Cape Town. Dr Matonhodze established the Pabalelong Hospice in order that people may die with dignity, and amongst their loved ones. This initiative is staffed by 2 doctors, a number of nurses, a dietician who also prepares food and a cleaner, and is entirely funded by the Catholic Church. Within 5 months of opening, there had been 24 patients admitted, 4 of which have cancer. He concluded with a passionate plea for any and all support available. Columbia In Columbia, one of the most topical issues in palliative care is euthanasia. Euthanasia has been legalised since 1998, but remains largely unregulated. Palliative care is unavailable within the public health system, and euthanasia is often seen as an alternative. Advocacy for better and more wide spread provision of palliative care is needed. Advocacy has been successfully in increasing opioid availability, and along with improving training in rational, effective prescribing, has meant that the management of physical pain has significantly improved in this context. Palliative care a very specialised service, which is closely linked to oncology, and not generally available, and this trend is similar throughout South America. There are some private initiatives, but these are only accessible to those able to pay for the services.

18 Nigeria Palliative care is slowly developing in Nigeria. All palliative care units are based within institutions, with the exception of one free standing hospice in Abuja. It is not considered a health care priority, and there is little to no palliative care training included in undergraduate medical curricula. Other opportunities for palliative care training are also very limited. Opioid availability is a significant challenge. There is a need for advocacy around this issue. Namibia Palliative care is still very new in Namibia. Namibia is a big country, the people are scattered and there are very few nurses trained in palliative care. This leads to significant communication and networking difficulties. There are community based programmes run by the Catholic Church, with some communication with the hospital. Tanzania Tanzania has a population of about 14 million people. The HIV mortality rate is falling, and cancer mortality is rising. Palliative care is making great strides, with 4 centres of excellence: a centrally located cancer hospital, and 3 peripheral institutions. Only 1 of 5 medical schools and 2 or 3 of many nursing schools include a palliative care component in their curriculum. To date, there exists no publishing forum for research. The biggest need is for oral morphine in rural areas. These drugs are available to about 10% of people who might need them. A strong advocacy movement for multi sectoral palliative care is needed. Uganda Palliative care was introduced to Uganda in 1993, has grown tremendously since then and has served as a model for Africa. In 2000, it was included in the national health care plan. Palliative care is incorporated into medical and nursing curricula, and publishing opportunities available. A recent amendment of narcotic law means that nurses are allowed to prescribe morphine. The biggest challenge is coverage and morphine availability. No morphine is available in the government sector because of systemic problems. Zimbabwe Zimbabwe has a long tradition of hospice and bereavement care. The first hospice in Africa was here, and Zimbabwe continues to lead the way in African palliative care. For instance, nurses prescribe morphine. Because funding is directed at HIV/AIDS and home based care, people are grabbing the opportunity, and initiatives are being started by people who do not necessarily have the necessary training. The University of Zimbabwe will start offering palliative care training from next year, modeled on the UCT postgraduate diploma course. South Africa In South Africa, palliative care is very strong in the NGO sector. Hospital based palliative care programmes are appearing, e.g. Victoria Hospital s Abundant Life programme. Significant achievements include a memorandum of agreement with correctional services and the department of defence, research around palliative care for tuberculosis, advances in paediatric palliative care and improvements in frail care and homes for the elderly. The University of Cape Town includes a palliative care component in the undergraduate medical curriculum. This component is likely to be strengthened with the curriculum review process currently underway. There are also a number of postgraduate and research opportunities

19 available. Legislation around nurses prescribing is being explored, and palliative care will be incorporated into the nursing curriculum soon. Belgium Palliative care is well established in Belgium. New euthanasia legislation is proving problematic, because now that it has been legalised, patients are demanding instead of asking for the service. Prof van den Eyden briefly discussed their relationship in setting up palliative care services in Ecuador, where there formerly were none. He also explored a number of models for implementation. THE MEETING CLOSED, HAVING RESOLVED TO MEET AGAIN IN MAY 2011 AT THE EUROPEAN ASSOCIATION FOR PALLIATIVE CARE CONFERENCE IN LISBON, PORTUGAL. Acknowledgement We would like to acknowledge the work of Yumna Moosa and Rufaro Nyamuda, Medical students of Cape Town University, who acted as scribes for this event.