Palliative Care in Africa: Creativity in Practice

1. African Palliative Care Association 3rd Triennial Conference Windhoek, Namibia 15-17 September 2010 Palliative Care in Africa: Creativity in Practice

2. Capturing the complexity of palliative care Mervyan J. Konjore HPCA mervyan@hpca.co.za

3. Presentation Outline • Introduction • Methodology • Lessons Learnt • Recommendations

4. Introduction • HPCA and member hospices across SA subscribe to the WHO definition of palliative care when rendering palliative care services to patients and their families • WHO defines palliative care as: “an approach that improves the quality of life of patients and their families facing problems associated with life-threatening illness, through the prevention and relief of suffering, early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.”

5. Introduction (2) • Range and diversity of such palliative care service provision creates interesting, yet complex challenges for national data capture systems • To ensure data capture that is reflective of what happens in practice, HPCA and member hospices designed and constructed a standardised data capture tool

6. Methodology • Nationally, the development of a standardized data capture tool was driven by need to report on holistic provision of clinical, psychosocial, social and spiritual care • Frequency and duration of visits to patients and family members • Number and range of palliative care interventions provided during visits • Knowledge, skills & experience of hospice staff providing palliative care interventions • Supervision of palliative care interventions provided by hospice staff

7. Methodology (2) • The design of the standardized data capture tool also took into account, the hospice data needs to provide continuously quality palliative care for their patients and families: • Personal and demographic details of patients and family members • Track patient status (i.e. Discharged, LTF) • Multiple diagnosis • Category/level of illness • Medicine and equipment provided to patients

8. Methodology (3) • Exposure to OVC threats • Where was care rendered? • Internal and external referrals between hospice and networking partners • Who is the patient’s primary hospice care giver • Palliative care provided to family members • Patient movements between IPU and HBC

9. Methodology (4) • Purposefully selected a pilot of ten hospices across the nine provinces of SA • An existing culture to maintain data quality • Had been maintaining a number of data capture tools/systems to meet various donor information requirements • Palliative care services were underpinned by the WHO definition of palliative care • Willing to craft a path for change

10. Methodology (5) • Sample included a diverse range of palliative care services across: • Rural vs. Urban settings • IPU vs. HBC settings • Children vs. Adult palliative care programs • Size - small, medium and large hospices included • Financial resourcefulness – • Diversity in pallative care HR composition and availability

13. Lessons Learnt • Consultative and participative methodologies between the national association and hospices create collaborative opportunities to: • Ease capture and recording of palliative care by disentangling its complexity • Provide data capture solutions that are informed by existing practice • Develop a common, standardized understanding palliative care terms, definitions and recording • Creates local ownership and buy-in

14. Lessons Learnt (2) • Benefits are heavily dependent on training and continuous mentorship that: • Maintain consistent/correct interpretations of similar concepts across hospices • Could be provided by peers in collaboration with M&E staff • Reinforced by the development, provision and availability of complementary documents, i.e. definitions of interventions, standardised training manuals • Active mentorship to address challenges • Level of interest and management commitment to invest resources in data capture

15. Recommendations • Involve palliative care staff in the design and development of national data capture tools to capture the range and diversity of palliative care service provision • Complement development of tools with training and continuous mentorship