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Research
An evaluation of a public health advocacy strategy to enhance palliative care provision in Zambia Dorothy Elizabeth Logie Correspondence to Dorothy Elizabeth Logie, Cheviot View, Bowden, Melrose TD6 0ST, UK; [email protected] Received 6 March 2012 Accepted 24 April 2012
ABSTRACT Background The provision of palliative and end-of-life care for patients with progressive disease is inadequate worldwide. The WHO strategy to develop a public health system of palliative care at the national level proposes a quadripartite approach: policy, education, drug availability and implementation. This is particularly necessary in low income countries facing a high disease burden with low resources. To date there have been no published evaluations of advocacy strategies aiming to use the WHO approach to enhance access to palliative care. Objective To evaluate the Palliative Care Initiative which implements the WHO approach to strategically improve palliative care throughout Zambia, using a multiple methods rapid field evaluation. Methods and results Eight hospices and palliative care organisations in Zambia were part-funded over 2 years (2009–11) and were thus able to expand their services, offer a reliable supply of drugs, secure fuel for transport, and support home carers. Simultaneously, an extensive programme of rural and urban training resulted in staff being more confident in caring for the dying with improved attitudes to the concerns of very ill patients and their families. A multi-agency morphine pilot project led by the Palliative Care Association of Zambia and the Ministry of Health resolved some of the obstacles and increased morphine availability although its use remains low. Palliative care is now being considered by the technical working group at the Ministry of Health. Conclusions For palliative care to thrive in any resource-poor country it must be integrated into the public health system and secure long-term funding.
BACKGROUND The WHO estimates that there are 0.5 million deaths per year from cancer in Africa, and that 70% of all new cancer cases will be in the developing world by 2020.1 Cancer rates will grow by 300% in low income countries over the next 50 years.2 In Zambia, with a population of 11 million and an HIV prevalence of 14.3%, 3 many people have late stage HIV and/or cancer but do not have access to appropriate care. Palliative care was introduced to Zambia many years ago, but provision and access have been patchy. As in most countries in subSaharan Africa, Zambia did not consider palliative care a public health problem and did not include it in their national health plans. Although ‘islands of excellence’ in palliative care existed, standards were inconsistent and initiatives were not integrated into the country’s health polices. The Diana, Princess of Wales Memorial Fund (DPWMF) has played a key role in promoting the development of palliative care in seven sub-Saharan 264
Africa countries through its Palliative Care Initiative (PCI). In 2008 the Fund, recognising a change in policy in Zambia, established a 2-year small grants programme and planned to link it with the Pilot of Oral Morphine in Zambia’s Hospices, a partnership between the Ministry of Health (MOH) and the Palliative Care Association of Zambia (PCAZ), funded by The True Colours Trust. The aim of both funders was to enhance the status of palliative care in Zambia and improve access to pain relief. At that time, there were 12 palliative care hospices throughout the country, mainly small charitable institutions with very little, if any, Government of Zambia (GRZ) funding. In rural areas palliative care tended to be provided via home-based care programmes. A Zambian palliative care association (PCAZ) was founded in 2006. Recognising that palliative care provision was limited by lack of government policy and highly restrictive regulations regarding the availability of morphine, the DPWMF established a strategic grant programme between 2009 and 2011 to coincide with a morphine pilot programme which was later funded by The True Colours Trust. The purpose of the work of the two charitable grantmaking bodies was to expand the use of oral morphine, improve prescribing knowledge and increase access to care. It was hoped that this synergistic multi-faceted approach would boost palliative care in Zambia based on the WHO’s four public health ‘pillars’ to integrate and establish palliative care: (1) government policy; (2) palliative care education for healthcare staff and the public; and (3) drug availability to ensure access to drugs for pain control, which would lead to (4) a national strategy to implement palliative care.4 5 A previous systematic review of the status of palliative care in sub-Saharan Africa found very little descriptive or outcome data, and no evaluative evidence of the impact of advocacy activities.6 This paper aims to describe and evaluate a strategic advocacy programme to enhance the provision of palliative care in a sub-Saharan African country.
METHODS The advocacy strategy and activity The strategy aims were as follows: (1) to improve access to care by funding eight palliative care organisations with small grants to cover their running costs over 2 years; (2) to fund five distance learning diploma (DLD) students to study palliative care for 18 months, and also to deliver several expert-led multi-disciplinary short training courses for both health professionals and carers in rural and urban areas; and (3) to facilitate an improved essential palliative care drug supply
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Research and, with The True Colours Trust, to support a morphine pilot project in collaboration with the MOH. This strategy included multi-agency advocacy and high level lobbying to promote palliative care as part of government policy. Therefore, the advocacy strategy mapped broadly onto the WHO palliative care public health strategy,7 addressing the central pillars of implementation, education, drug availability and policy enablement.
Evaluation methods A mixed-method evaluation protocol was implemented8 which included rapid evaluation field techniques.9 10 The work was conducted using desk surveys, facility interviews, and data from two field visits to Zambia between 2009 and 2011. Data were triangulated from multiple sources using observation of practice, facility interviews, feedback from trainees and interviews with key personnel and funders working in Zambia during the period. This provided the opportunity for verification of data through triangulation.11 Data collection is described below.
Objective 1: Data collection from the funded organisations Use of funding by the eight palliative care organisations (three urban and five rural) was assessed by a baseline structured questionnaire at the start (2009) and another at the end of the PCI funding (2011). In addition, the work, premises and pharmacy stores of the eight organisations were observed by clinical teams during field visits in 2009. In most cases, this visit was repeated 18–24 months later. The indicators used were: geographical coverage, length of time in operation, workload, patient profi le, staff numbers, training, use of community volunteers, medical support, referral patterns, observation of the quality of care, use of fees and charges, drug availability, advocacy, other funders, and the use to which the strategic grant had been put. The locations of the organisations are shown in figure 1 and their descriptions given in table 1.
Objective 2: Education and training An African hospice conducted 1 week of expert-led palliative care training at the Cancer Diseases Hospital in Lusaka. The effectiveness of this training was assessed by feedback forms at completion of the course and by individual interviews of attendees during 2011. Feedback from other training sessions (rural and urban) was gathered during site visits to funded organisations. The progress and outcomes of the DLD training were assessed by two in-depth interviews with each of the four completing students at their workplace, one at the start and the second at the end of the 18-month course.
Objective 3: Influencing government policy and improving access to morphine The status of palliative care in Zambia was assessed through interviews in 2009 with PCAZ, the Churches Health Association of Zambia, USAID, key personnel at the MOH, the National AIDS Council and the Department of Overseas Development in Lusaka. Repeat interviews were carried out in 2011. The progress of the morphine pilot project was monitored by interviews with the morphine pilot team (a project officer and a project nurse) and PCAZ. No patient-level data were used, and all facilities visited and key informants gave their consent for participation.
RESULTS Objective 1: Grant support for the funded palliative care organisations The eight supported palliative care organisations during the 2-year period included five hospices and three home-based care organisations, two of which were rural and very remote. The sizes of the populations covered ranged from 4000 to 200 000. Five organisations had in-patient beds plus an outpatient facility or community programme, while three had no in-patient beds but only a community programme run by trained volunteers supervised by health staff. All had benefited
Figure 1 A map of the geographical situations of the 8 palliative care organisations in Zambia supported by the PCI 2009-2011 BMJ Supportive & Palliative Care 2012;2:264–269. doi:10.1136/bmjspcare-2012-000232
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Research from palliative care training under this PCI and functioned as ‘islands of excellence’ as none had government support during the PCI period and little central co-ordination. The PCI grants were small (£20 000 to each organisation over 2 years) but were used flexibly to cover general running costs, salaries, drugs and vehicle fuel. The flexibility allowed the organisations to target their greatest priorities and resulted in improved capacity, mainly by increasing staff and/or meeting salary costs. The funds were used to buy drugs (antibiotics, analgesics up to WHO step 2, anti-emetics), provide fuel for patient transport, and support caregivers with incentives including soap and blankets. The remote programmes with outreach benefited
particularly from the funding as transport costs were so high. The grant became the only source of funding for some of the organisations as other funders withdrew: It has helped to increase in-patient numbers from 16 to 34 per month and has increased the clinic’s involvement with family members. (Administrator) PCI supplies our drugs, and helps to supports the home based care with food for clients. PCI helps with fuel so we can collect blood tests and do the sensitisation training. I took a man with bad KS [Kaposi’s sarcoma] to Mansa to be seen by the doctor. And I collected his ARVs [antiretroviral drugs], all because of PCI fuel. (Nurse at home-based care programme)
Table 1 Description of the 8 palliative care organisations funded by the Palliative Care Initiative of the Diana Princess of Wales Memorial Fund 2009–11. The numbers refer to map location.
266
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Research Table 1
Continued.
Box 1 describes an example of a novel service funded by the PCI that enhanced access. During the 2-year PCI funding period, all eight organisations flourished, employed extra staff, supported carers with incentives and equipment, and ensured a regular supply of drugs to treat opportunistic diseases. This increased patient numbers and, in some cases, the organisations were able to extend their outreach. However, dependency on donor funding made them vulnerable to donor policy change and when one significant funder withdrew (which coincided with completion of the PCI funding), the eight organisations had to cut back drastically on staffi ng, drugs and outreach programmes and much of the improvement in services was dissipated. At the fi nal assessment in 2011, three organisations were struggling to fi nd funds and were on the verge of closure, while two programmes were fi nancially cushioned by PCI funds invested in income generating programmes (eg, hens, gardens for clients and a piggery).
Objective 2: Palliative care training Fifty-four health professionals from the Cancer Diseases Hospital and hospices, 12 student nurses and three tutors from the University Teaching Hospital in Lusaka were trained at The Cancer Hospital in Lusaka. In addition, short courses were given to various cadres of health staff 800 miles north of Lusaka, at a Lusaka hospice and at a rural hospice. The aim of BMJ Supportive & Palliative Care 2012;2:264–269. doi:10.1136/bmjspcare-2012-000232
this training was to share palliative care knowledge and skills with health caregivers for the management of cancer, HIV/ AIDS and other terminal illnesses, plus care of the bereaved. Post-training gains noted by recipients were: increased confidence in speaking to dying patients, reduced fear of caring for the dying themselves, ability to involve the whole family, and a better understanding of types of pain and the WHO pain ladder, and ethical issues around disclosure. Participants said that it had changed their attitude to dying patients. The multi-professional aspect and practical clinical sessions were particularly beneficial. The trainees felt greater understanding and confidence in addressing the topic and the needs of their patients: I now realise that speaking to patients about death and dying is very important. (DLD student)
Another said: My attitude and practice has changed. I have learnt how to handle patients fears, anxiety, and aggression. It was particularly useful that all disciplines and all levels of staff were brought together in an excellent training environment which included clinical cases and bedside teaching. Thirty student nurses have now been trained. (Oncology pharmacist)
The need for clinical supervised learning was emphasised in rural training settings: 267
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Research
Box 1 An example of innovative use of the PCI grant in a rural area A PCI grant was used innovatively to supply and train staff (2 nurses and a care giver) for a mobile clinic in a rural area. A dedicated vehicle covered 6 remote areas not previously receiving any medical care. 600 patients registered and benefited from health care and HIV prevention plus a reliable supply of drugs. 150 home carers were trained to deliver holistic clinical care, pain management, HIV prevention, and to tackle stigma. Health prevention training was a key feature and this was done in the local language. The clinic worked closely with local NGOs, the District Health Management Team, and Rural Health Centres. Its success emphasises the importance of bringing health care as near to the patient as possible. The Volunteer nurse organiser said “Of 80 females testing positive for HIV, only 12 are on ART. They (women) don’t want to attend (an ART clinic) as 50% of their income can be spent on travelling for ARTs. That is why remote clinics are so important.”
Any new knowledge gained in the theoretical setting needs really to be put into practice under supervision in the clinical setting. This does not happen. (Nurse at a rural hospice)
By the follow-up visit in 2011, no further training had taken place due to lack of new funds. Although the reported change in staff attitude to the sick and dying appeared to have persisted (shown by increased sensitivity to the needs of the very ill and their families), many trainees felt that the impact of the training might be dissipated because of high staff turnover. Four of the five diploma students completed the 18-month DLD at Nairobi Hospice, gaining hugely in confidence and knowledge, and were keen to act as future palliative care leaders and advocates: My big dream is that palliative care will be part of the health system in Zambia. (DLD student) My understanding of death: I used to be very scared, now I can look at different causes of pain, and help with emotional pain. (DLD student)
Practical challenges mentioned by the students included the struggle to obtain course material, lack of access to computers, and lack of mentors within Zambia.
Objective 3: Government policy and pain relief The morphine pilot staff trained 60 key workers at 11 Zambian hospices, plus teaching hospital pharmacists, paediatric staff, and oncology personnel. The pilot project helped defi ne the legal and logistical obstacles to accessing morphine, co-ordinated its delivery and procurement, and defi ned who was responsibility for prescribing morphine. A multi-sectoral working party was set up consisting of the Drug Enforcement Agency, National AIDS Council, Pharmaceutical Society, Pharmaceutical Regulatory Body, Zambia Nurses Association, and Palliative Care Association and organised publication of a handbook entitled Using morphine to manage pain: a fact book for Zambia containing user-friendly advice for health staff.12 One significant success of the morphine roll out occurred in Ndola (the second largest city in Zambia) where, over 2 years, oral morphine for pain relief became available, could be accessed with 268
little bureaucracy, was being used by both the hospice and the central hospital, and was distributed to patients on discharge. During the 2-year period, the hospices were officially recognised by The Medical and Allied Professions Council with standards of care set by a strengthened PCAZ based on the African Palliative Care Association standards.13 PCAZ is now working through a high-level MOH-led technical working party to ensure that palliative care is recognised in the GRZ’s future health plans.
DISCUSSION This aim of this evaluation was to determine the impact of a multi-level advocacy strategy in Zambia to implement the four ‘pillars’ of the WHO public health strategy to improve palliative care in a resource-poor country. The Zambian palliative environment was considerably enhanced by strengthening palliative care organisations with modest extra funding, by delivering a programme of training which covered both rural and urban areas, by improved access to morphine and other drugs over the 2-year period, and by a strengthened palliative care organisation to lobby and support the hospices and improve standards. Although the funding to the palliative care organisations for service delivery was modest (£20 000 per organisation over 2 years), it was targeted to poor and rural areas that particularly benefited. The grants were given with few restrictions, which allowed organisations to develop in a way that was sensitive to local needs. The PCI grants also had a beneficial effect in that organisations were regarded, often for the fi rst time, as significant deliverers of health care, as they had a supply of effective drugs and could offer a reliable service. As patients recovered, this reduced the fear of hospices as ‘places to go only to die’. Although some of these benefits will hopefully remain, the change in donor funding during 2010 caused many of the hospices to severely curtail their services. At the end of the 2-year project, all the palliative care organisations were struggling to satisfy the needs of their community with limited resources and increased demand. For example, one community palliative care programme had a large waiting list but was afraid to expand beyond one-quarter of their target area because of lack of funds. Unfortunately, at least one hospice and the mobile clinic had closed. The expert-led training of staff at the Cancer Diseases Hospital was very well received and had a lasting effect, although it was pointed out that training should be repeated because of staff attrition. It was encouraging to fi nd that, at interview, the details of the 2009 training were still accurately recalled and being used in daily practice 18 months later. The staff reported that the training had changed their attitudes to dying patients and given them a new understanding of patients’ rights and a better understanding of holistic family care. The four DLD graduates (one student dropped out) were particularly enthused by their experience. The improvement in access to and use of oral morphine and other palliative care drugs at Ndola Central Hospital is a good example of coordinated work by the graduates between the hospital administration, the Ndola Hospice (Cicetekelo) and the community. The morphine pilot project has helped reduce legal obstacles and fear of morphine prescribing. Although improved access to morphine has been agreed, with provision through the statutory powers of the Permanent Secretary for Health to authorise other qualified health workers to prescribe in the absence of a doctor, morphine is still only being used in hospitals and hospices. As there is a serious lack of pharmacists, rural BMJ Supportive & Palliative Care 2012;2:264–269. doi:10.1136/bmjspcare-2012-000232
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Research programmes without a doctor or pharmacist are unlikely to have opioids access for some time. Training to prescribe medicines should be repeated frequently throughout the country, and standardised pain measurement put in place. Despite the substantial effort of the morphine pilot project, consumption of morphine in Zambia remains very low. The pilot ended in February 2012. Government policy has been slower to alter but, with a strengthened PCAZ and official recognition by the Medical and Allied Professions Council and the MOH, the future of palliative care both as a concept and a speciality within the health sector should be assured. PCAZ is now working to develop a National Palliative Care Strategic Plan directed by the MOH and it is hoped that the discipline will be promoted in the future national health development plans. If this occurs, then other donors might be willing to fi ll the funding gap, along with a MOH contribution towards drug supply and staffi ng. However, the sustainability of many of these benefits depends on the priorities of other donors and of GRZ’s own health priorities. Despite the considerable success of the PCI project, many challenges to the palliative care sector remain. The sustainability of support for the dying is threatened by the continuing high rates of HIV, cancer and life-threatening chronic diseases. Currently, palliative care can only reach a fraction of those who need it. For those working in remote rural areas, transport costs are high, staffi ng levels are low and the demand is huge. However, the example of Choma showed that mobile palliative care clinics can supply a large range of out-reach services. Because of funding restraints and the fact that palliative care is often the only form of medical care people receive, it is important for resource-poor countries to consider the most cost-effective forms of care. Palliative care should be linked to HIV/AIDS and other health care programmes as it can help support prevention, adherence, health education and the treatment of opportunistic infections. However, although such an integrated approach is essential to ensuring optimal palliative care coverage by training existing providers in generalist skills, the PCI demonstrates that continued funding to specialist palliative care organisations is essential as they are required to both manage complex cases, either by providing patient care or consultation with other providers, and importantly to undertake strategic activities such as education, policy advocacy and co-ordination. Long distances to health care facilities deter therapeutic uptake, especially for women. Volunteers are central to the functioning of these services, and maintaining quality is challenging. The volunteer carers need professional support,
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frequent training as turnover is high, and also fi nancial recognition. Home-based carers should be included in the concept and provision of palliative care.
CONCLUSIONS It has been shown here that a strategic advocacy approach can be a powerful tool for a country to catalyse change. The four WHO strategic ‘pillars’ need to be in place simultaneously as, for example, training without a fi nancially supported palliative care infrastructure may not bring sustained change in practice. What has been demonstrated here is that small amounts of welltargeted funding can improve care to a great number of very sick people, and increase health knowledge. Training in palliative care can change medical staffs’ attitudes towards the very sick, while a reliable supply of drugs can improve the public’s confidence in palliative care. However, the reality is that palliative care needs reliable funding. The cost of running hospices and palliative care organisations is not sustainable without either funding from significant donors or from central government. Acknowledgements The author wishes to thank all the participants of this evaluation. Funding The Diana, Princess of Wales Memorial Fund supported this study. Competing interests None. Provenance and peer review Not commissioned; externally peer reviewed.
REFERENCES 1. Ramsay S. Raising the profile of palliative care for Africa. Lancet 2001;358:734. 2. Morris K. Cancer? In Africa? Lancet Oncol 2003;4:5. 3. National AIDS Council of Zambia 2011. http://www.unaids.org/globalreport (accessed 29 January 2012). 4. Stjernswärd J, Foley KM, Ferris FD. The public health strategy for palliative care. J Pain Symptom Manage 2007;33:486–493. 5. Sepulveda C. Cancer and Palliative Care, WHO. Cancer and Palliative Care. Paper at 2nd APCA Palliative Care Conference Nairobi 2007, by Senior Advisor Cancer Control, World Health Organisation. 6. Harding Richard, Higginson Irene. Palliative Care in sub-Saharan Africa. The Lancet 2005;365:1971–77. 7. Stjernswärd J. Uganda: initiating a government public health approach to pain relief and palliative care. J Pain Symptom Manage 2002;24:257–264. 8. Grant L, Brown J, Leng M, et al. Palliative care making a difference in rural Uganda, Kenya and Malawi: three rapid evaluation field studies. BMC Palliat Care 2011;10:8. 9. Anker M. Epidemiological and statistical methods for rapid health assessment introduction. World Health Statistics Quarterly 1991;44:94–7. 10. Rapid evaluation methods (REM) of health service performance methodological observe. Bul World Health Organ 1993;71:15–21. 11. Murray SA. Experiences with “rapid appraisal” in primary care: involving the public in assessing health needs, orientating staff, and educating medical students. BMJ 1999;318:440–444. 12. Using Morphine to manage HIV/AIDS pain: A Fact Book for Zambia. January 2008. SHARe Project. Download from SHARe publications at www.abtasoc.com. 13. African Palliative Care Association: APCA Standards for Providing Quality Palliative Care across Africa. APCA Uganda First Edition 2010 www.apca.org.ug.
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An evaluation of a public health advocacy strategy to enhance palliative care provision in Zambia Dorothy Elizabeth Logie BMJ Support Palliat Care 2012 2: 264-269
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doi:10.1136/bmjspcare-2012-000232corr1 Logie DE. An evaluation of a public health advocacy strategy to enhance palliative care provision in Zambia. BMJ Support Palliat Care 2012;2:264–269. Dr Richard Harding was missed off the author list for this paper. The author list should read 'Logie DE, Harding R'. Dr Harding’s affiliation is King’s College London, Cicely Saunders Institute, Department of Palliative Care, Policy & Rehabilitation, Bessemer Road, London SE5 9PJ, UK.
BMJ Supportive & Palliative Care 2012;2:373–375. doi:10.1136/bmjspcare-2012-000202
bmjspcare-2012-000202.indd Sec1:3
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10/25/2012 5:36:03 PM
Research
An evaluation of a public health advocacy strategy to enhance palliative care provision in Zambia Dorothy Elizabeth Logie Correspondence to Dorothy Elizabeth Logie, Cheviot View, Bowden, Melrose TD6 0ST, UK; [email protected] Received 6 March 2012 Accepted 24 April 2012
ABSTRACT Background The provision of palliative and end-of-life care for patients with progressive disease is inadequate worldwide. The WHO strategy to develop a public health system of palliative care at the national level proposes a quadripartite approach: policy, education, drug availability and implementation. This is particularly necessary in low income countries facing a high disease burden with low resources. To date there have been no published evaluations of advocacy strategies aiming to use the WHO approach to enhance access to palliative care. Objective To evaluate the Palliative Care Initiative which implements the WHO approach to strategically improve palliative care throughout Zambia, using a multiple methods rapid field evaluation. Methods and results Eight hospices and palliative care organisations in Zambia were part-funded over 2 years (2009–11) and were thus able to expand their services, offer a reliable supply of drugs, secure fuel for transport, and support home carers. Simultaneously, an extensive programme of rural and urban training resulted in staff being more confident in caring for the dying with improved attitudes to the concerns of very ill patients and their families. A multi-agency morphine pilot project led by the Palliative Care Association of Zambia and the Ministry of Health resolved some of the obstacles and increased morphine availability although its use remains low. Palliative care is now being considered by the technical working group at the Ministry of Health. Conclusions For palliative care to thrive in any resource-poor country it must be integrated into the public health system and secure long-term funding.
BACKGROUND The WHO estimates that there are 0.5 million deaths per year from cancer in Africa, and that 70% of all new cancer cases will be in the developing world by 2020.1 Cancer rates will grow by 300% in low income countries over the next 50 years.2 In Zambia, with a population of 11 million and an HIV prevalence of 14.3%, 3 many people have late stage HIV and/or cancer but do not have access to appropriate care. Palliative care was introduced to Zambia many years ago, but provision and access have been patchy. As in most countries in subSaharan Africa, Zambia did not consider palliative care a public health problem and did not include it in their national health plans. Although ‘islands of excellence’ in palliative care existed, standards were inconsistent and initiatives were not integrated into the country’s health polices. The Diana, Princess of Wales Memorial Fund (DPWMF) has played a key role in promoting the development of palliative care in seven sub-Saharan 264
Africa countries through its Palliative Care Initiative (PCI). In 2008 the Fund, recognising a change in policy in Zambia, established a 2-year small grants programme and planned to link it with the Pilot of Oral Morphine in Zambia’s Hospices, a partnership between the Ministry of Health (MOH) and the Palliative Care Association of Zambia (PCAZ), funded by The True Colours Trust. The aim of both funders was to enhance the status of palliative care in Zambia and improve access to pain relief. At that time, there were 12 palliative care hospices throughout the country, mainly small charitable institutions with very little, if any, Government of Zambia (GRZ) funding. In rural areas palliative care tended to be provided via home-based care programmes. A Zambian palliative care association (PCAZ) was founded in 2006. Recognising that palliative care provision was limited by lack of government policy and highly restrictive regulations regarding the availability of morphine, the DPWMF established a strategic grant programme between 2009 and 2011 to coincide with a morphine pilot programme which was later funded by The True Colours Trust. The purpose of the work of the two charitable grantmaking bodies was to expand the use of oral morphine, improve prescribing knowledge and increase access to care. It was hoped that this synergistic multi-faceted approach would boost palliative care in Zambia based on the WHO’s four public health ‘pillars’ to integrate and establish palliative care: (1) government policy; (2) palliative care education for healthcare staff and the public; and (3) drug availability to ensure access to drugs for pain control, which would lead to (4) a national strategy to implement palliative care.4 5 A previous systematic review of the status of palliative care in sub-Saharan Africa found very little descriptive or outcome data, and no evaluative evidence of the impact of advocacy activities.6 This paper aims to describe and evaluate a strategic advocacy programme to enhance the provision of palliative care in a sub-Saharan African country.
METHODS The advocacy strategy and activity The strategy aims were as follows: (1) to improve access to care by funding eight palliative care organisations with small grants to cover their running costs over 2 years; (2) to fund five distance learning diploma (DLD) students to study palliative care for 18 months, and also to deliver several expert-led multi-disciplinary short training courses for both health professionals and carers in rural and urban areas; and (3) to facilitate an improved essential palliative care drug supply
BMJ Supportive & Palliative Care 2012;2:264–269. doi:10.1136/bmjspcare-2012-000232
Downloaded from http://spcare.bmj.com/ on July 16, 2015 - Published by group.bmj.com
Research and, with The True Colours Trust, to support a morphine pilot project in collaboration with the MOH. This strategy included multi-agency advocacy and high level lobbying to promote palliative care as part of government policy. Therefore, the advocacy strategy mapped broadly onto the WHO palliative care public health strategy,7 addressing the central pillars of implementation, education, drug availability and policy enablement.
Evaluation methods A mixed-method evaluation protocol was implemented8 which included rapid evaluation field techniques.9 10 The work was conducted using desk surveys, facility interviews, and data from two field visits to Zambia between 2009 and 2011. Data were triangulated from multiple sources using observation of practice, facility interviews, feedback from trainees and interviews with key personnel and funders working in Zambia during the period. This provided the opportunity for verification of data through triangulation.11 Data collection is described below.
Objective 1: Data collection from the funded organisations Use of funding by the eight palliative care organisations (three urban and five rural) was assessed by a baseline structured questionnaire at the start (2009) and another at the end of the PCI funding (2011). In addition, the work, premises and pharmacy stores of the eight organisations were observed by clinical teams during field visits in 2009. In most cases, this visit was repeated 18–24 months later. The indicators used were: geographical coverage, length of time in operation, workload, patient profi le, staff numbers, training, use of community volunteers, medical support, referral patterns, observation of the quality of care, use of fees and charges, drug availability, advocacy, other funders, and the use to which the strategic grant had been put. The locations of the organisations are shown in figure 1 and their descriptions given in table 1.
Objective 2: Education and training An African hospice conducted 1 week of expert-led palliative care training at the Cancer Diseases Hospital in Lusaka. The effectiveness of this training was assessed by feedback forms at completion of the course and by individual interviews of attendees during 2011. Feedback from other training sessions (rural and urban) was gathered during site visits to funded organisations. The progress and outcomes of the DLD training were assessed by two in-depth interviews with each of the four completing students at their workplace, one at the start and the second at the end of the 18-month course.
Objective 3: Influencing government policy and improving access to morphine The status of palliative care in Zambia was assessed through interviews in 2009 with PCAZ, the Churches Health Association of Zambia, USAID, key personnel at the MOH, the National AIDS Council and the Department of Overseas Development in Lusaka. Repeat interviews were carried out in 2011. The progress of the morphine pilot project was monitored by interviews with the morphine pilot team (a project officer and a project nurse) and PCAZ. No patient-level data were used, and all facilities visited and key informants gave their consent for participation.
RESULTS Objective 1: Grant support for the funded palliative care organisations The eight supported palliative care organisations during the 2-year period included five hospices and three home-based care organisations, two of which were rural and very remote. The sizes of the populations covered ranged from 4000 to 200 000. Five organisations had in-patient beds plus an outpatient facility or community programme, while three had no in-patient beds but only a community programme run by trained volunteers supervised by health staff. All had benefited
Figure 1 A map of the geographical situations of the 8 palliative care organisations in Zambia supported by the PCI 2009-2011 BMJ Supportive & Palliative Care 2012;2:264–269. doi:10.1136/bmjspcare-2012-000232
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Research from palliative care training under this PCI and functioned as ‘islands of excellence’ as none had government support during the PCI period and little central co-ordination. The PCI grants were small (£20 000 to each organisation over 2 years) but were used flexibly to cover general running costs, salaries, drugs and vehicle fuel. The flexibility allowed the organisations to target their greatest priorities and resulted in improved capacity, mainly by increasing staff and/or meeting salary costs. The funds were used to buy drugs (antibiotics, analgesics up to WHO step 2, anti-emetics), provide fuel for patient transport, and support caregivers with incentives including soap and blankets. The remote programmes with outreach benefited
particularly from the funding as transport costs were so high. The grant became the only source of funding for some of the organisations as other funders withdrew: It has helped to increase in-patient numbers from 16 to 34 per month and has increased the clinic’s involvement with family members. (Administrator) PCI supplies our drugs, and helps to supports the home based care with food for clients. PCI helps with fuel so we can collect blood tests and do the sensitisation training. I took a man with bad KS [Kaposi’s sarcoma] to Mansa to be seen by the doctor. And I collected his ARVs [antiretroviral drugs], all because of PCI fuel. (Nurse at home-based care programme)
Table 1 Description of the 8 palliative care organisations funded by the Palliative Care Initiative of the Diana Princess of Wales Memorial Fund 2009–11. The numbers refer to map location.
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Research Table 1
Continued.
Box 1 describes an example of a novel service funded by the PCI that enhanced access. During the 2-year PCI funding period, all eight organisations flourished, employed extra staff, supported carers with incentives and equipment, and ensured a regular supply of drugs to treat opportunistic diseases. This increased patient numbers and, in some cases, the organisations were able to extend their outreach. However, dependency on donor funding made them vulnerable to donor policy change and when one significant funder withdrew (which coincided with completion of the PCI funding), the eight organisations had to cut back drastically on staffi ng, drugs and outreach programmes and much of the improvement in services was dissipated. At the fi nal assessment in 2011, three organisations were struggling to fi nd funds and were on the verge of closure, while two programmes were fi nancially cushioned by PCI funds invested in income generating programmes (eg, hens, gardens for clients and a piggery).
Objective 2: Palliative care training Fifty-four health professionals from the Cancer Diseases Hospital and hospices, 12 student nurses and three tutors from the University Teaching Hospital in Lusaka were trained at The Cancer Hospital in Lusaka. In addition, short courses were given to various cadres of health staff 800 miles north of Lusaka, at a Lusaka hospice and at a rural hospice. The aim of BMJ Supportive & Palliative Care 2012;2:264–269. doi:10.1136/bmjspcare-2012-000232
this training was to share palliative care knowledge and skills with health caregivers for the management of cancer, HIV/ AIDS and other terminal illnesses, plus care of the bereaved. Post-training gains noted by recipients were: increased confidence in speaking to dying patients, reduced fear of caring for the dying themselves, ability to involve the whole family, and a better understanding of types of pain and the WHO pain ladder, and ethical issues around disclosure. Participants said that it had changed their attitude to dying patients. The multi-professional aspect and practical clinical sessions were particularly beneficial. The trainees felt greater understanding and confidence in addressing the topic and the needs of their patients: I now realise that speaking to patients about death and dying is very important. (DLD student)
Another said: My attitude and practice has changed. I have learnt how to handle patients fears, anxiety, and aggression. It was particularly useful that all disciplines and all levels of staff were brought together in an excellent training environment which included clinical cases and bedside teaching. Thirty student nurses have now been trained. (Oncology pharmacist)
The need for clinical supervised learning was emphasised in rural training settings: 267
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Research
Box 1 An example of innovative use of the PCI grant in a rural area A PCI grant was used innovatively to supply and train staff (2 nurses and a care giver) for a mobile clinic in a rural area. A dedicated vehicle covered 6 remote areas not previously receiving any medical care. 600 patients registered and benefited from health care and HIV prevention plus a reliable supply of drugs. 150 home carers were trained to deliver holistic clinical care, pain management, HIV prevention, and to tackle stigma. Health prevention training was a key feature and this was done in the local language. The clinic worked closely with local NGOs, the District Health Management Team, and Rural Health Centres. Its success emphasises the importance of bringing health care as near to the patient as possible. The Volunteer nurse organiser said “Of 80 females testing positive for HIV, only 12 are on ART. They (women) don’t want to attend (an ART clinic) as 50% of their income can be spent on travelling for ARTs. That is why remote clinics are so important.”
Any new knowledge gained in the theoretical setting needs really to be put into practice under supervision in the clinical setting. This does not happen. (Nurse at a rural hospice)
By the follow-up visit in 2011, no further training had taken place due to lack of new funds. Although the reported change in staff attitude to the sick and dying appeared to have persisted (shown by increased sensitivity to the needs of the very ill and their families), many trainees felt that the impact of the training might be dissipated because of high staff turnover. Four of the five diploma students completed the 18-month DLD at Nairobi Hospice, gaining hugely in confidence and knowledge, and were keen to act as future palliative care leaders and advocates: My big dream is that palliative care will be part of the health system in Zambia. (DLD student) My understanding of death: I used to be very scared, now I can look at different causes of pain, and help with emotional pain. (DLD student)
Practical challenges mentioned by the students included the struggle to obtain course material, lack of access to computers, and lack of mentors within Zambia.
Objective 3: Government policy and pain relief The morphine pilot staff trained 60 key workers at 11 Zambian hospices, plus teaching hospital pharmacists, paediatric staff, and oncology personnel. The pilot project helped defi ne the legal and logistical obstacles to accessing morphine, co-ordinated its delivery and procurement, and defi ned who was responsibility for prescribing morphine. A multi-sectoral working party was set up consisting of the Drug Enforcement Agency, National AIDS Council, Pharmaceutical Society, Pharmaceutical Regulatory Body, Zambia Nurses Association, and Palliative Care Association and organised publication of a handbook entitled Using morphine to manage pain: a fact book for Zambia containing user-friendly advice for health staff.12 One significant success of the morphine roll out occurred in Ndola (the second largest city in Zambia) where, over 2 years, oral morphine for pain relief became available, could be accessed with 268
little bureaucracy, was being used by both the hospice and the central hospital, and was distributed to patients on discharge. During the 2-year period, the hospices were officially recognised by The Medical and Allied Professions Council with standards of care set by a strengthened PCAZ based on the African Palliative Care Association standards.13 PCAZ is now working through a high-level MOH-led technical working party to ensure that palliative care is recognised in the GRZ’s future health plans.
DISCUSSION This aim of this evaluation was to determine the impact of a multi-level advocacy strategy in Zambia to implement the four ‘pillars’ of the WHO public health strategy to improve palliative care in a resource-poor country. The Zambian palliative environment was considerably enhanced by strengthening palliative care organisations with modest extra funding, by delivering a programme of training which covered both rural and urban areas, by improved access to morphine and other drugs over the 2-year period, and by a strengthened palliative care organisation to lobby and support the hospices and improve standards. Although the funding to the palliative care organisations for service delivery was modest (£20 000 per organisation over 2 years), it was targeted to poor and rural areas that particularly benefited. The grants were given with few restrictions, which allowed organisations to develop in a way that was sensitive to local needs. The PCI grants also had a beneficial effect in that organisations were regarded, often for the fi rst time, as significant deliverers of health care, as they had a supply of effective drugs and could offer a reliable service. As patients recovered, this reduced the fear of hospices as ‘places to go only to die’. Although some of these benefits will hopefully remain, the change in donor funding during 2010 caused many of the hospices to severely curtail their services. At the end of the 2-year project, all the palliative care organisations were struggling to satisfy the needs of their community with limited resources and increased demand. For example, one community palliative care programme had a large waiting list but was afraid to expand beyond one-quarter of their target area because of lack of funds. Unfortunately, at least one hospice and the mobile clinic had closed. The expert-led training of staff at the Cancer Diseases Hospital was very well received and had a lasting effect, although it was pointed out that training should be repeated because of staff attrition. It was encouraging to fi nd that, at interview, the details of the 2009 training were still accurately recalled and being used in daily practice 18 months later. The staff reported that the training had changed their attitudes to dying patients and given them a new understanding of patients’ rights and a better understanding of holistic family care. The four DLD graduates (one student dropped out) were particularly enthused by their experience. The improvement in access to and use of oral morphine and other palliative care drugs at Ndola Central Hospital is a good example of coordinated work by the graduates between the hospital administration, the Ndola Hospice (Cicetekelo) and the community. The morphine pilot project has helped reduce legal obstacles and fear of morphine prescribing. Although improved access to morphine has been agreed, with provision through the statutory powers of the Permanent Secretary for Health to authorise other qualified health workers to prescribe in the absence of a doctor, morphine is still only being used in hospitals and hospices. As there is a serious lack of pharmacists, rural BMJ Supportive & Palliative Care 2012;2:264–269. doi:10.1136/bmjspcare-2012-000232
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Research programmes without a doctor or pharmacist are unlikely to have opioids access for some time. Training to prescribe medicines should be repeated frequently throughout the country, and standardised pain measurement put in place. Despite the substantial effort of the morphine pilot project, consumption of morphine in Zambia remains very low. The pilot ended in February 2012. Government policy has been slower to alter but, with a strengthened PCAZ and official recognition by the Medical and Allied Professions Council and the MOH, the future of palliative care both as a concept and a speciality within the health sector should be assured. PCAZ is now working to develop a National Palliative Care Strategic Plan directed by the MOH and it is hoped that the discipline will be promoted in the future national health development plans. If this occurs, then other donors might be willing to fi ll the funding gap, along with a MOH contribution towards drug supply and staffi ng. However, the sustainability of many of these benefits depends on the priorities of other donors and of GRZ’s own health priorities. Despite the considerable success of the PCI project, many challenges to the palliative care sector remain. The sustainability of support for the dying is threatened by the continuing high rates of HIV, cancer and life-threatening chronic diseases. Currently, palliative care can only reach a fraction of those who need it. For those working in remote rural areas, transport costs are high, staffi ng levels are low and the demand is huge. However, the example of Choma showed that mobile palliative care clinics can supply a large range of out-reach services. Because of funding restraints and the fact that palliative care is often the only form of medical care people receive, it is important for resource-poor countries to consider the most cost-effective forms of care. Palliative care should be linked to HIV/AIDS and other health care programmes as it can help support prevention, adherence, health education and the treatment of opportunistic infections. However, although such an integrated approach is essential to ensuring optimal palliative care coverage by training existing providers in generalist skills, the PCI demonstrates that continued funding to specialist palliative care organisations is essential as they are required to both manage complex cases, either by providing patient care or consultation with other providers, and importantly to undertake strategic activities such as education, policy advocacy and co-ordination. Long distances to health care facilities deter therapeutic uptake, especially for women. Volunteers are central to the functioning of these services, and maintaining quality is challenging. The volunteer carers need professional support,
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frequent training as turnover is high, and also fi nancial recognition. Home-based carers should be included in the concept and provision of palliative care.
CONCLUSIONS It has been shown here that a strategic advocacy approach can be a powerful tool for a country to catalyse change. The four WHO strategic ‘pillars’ need to be in place simultaneously as, for example, training without a fi nancially supported palliative care infrastructure may not bring sustained change in practice. What has been demonstrated here is that small amounts of welltargeted funding can improve care to a great number of very sick people, and increase health knowledge. Training in palliative care can change medical staffs’ attitudes towards the very sick, while a reliable supply of drugs can improve the public’s confidence in palliative care. However, the reality is that palliative care needs reliable funding. The cost of running hospices and palliative care organisations is not sustainable without either funding from significant donors or from central government. Acknowledgements The author wishes to thank all the participants of this evaluation. Funding The Diana, Princess of Wales Memorial Fund supported this study. Competing interests None. Provenance and peer review Not commissioned; externally peer reviewed.
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An evaluation of a public health advocacy strategy to enhance palliative care provision in Zambia Dorothy Elizabeth Logie BMJ Support Palliat Care 2012 2: 264-269
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doi:10.1136/bmjspcare-2012-000232corr1 Logie DE. An evaluation of a public health advocacy strategy to enhance palliative care provision in Zambia. BMJ Support Palliat Care 2012;2:264–269. Dr Richard Harding was missed off the author list for this paper. The author list should read 'Logie DE, Harding R'. Dr Harding’s affiliation is King’s College London, Cicely Saunders Institute, Department of Palliative Care, Policy & Rehabilitation, Bessemer Road, London SE5 9PJ, UK.
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