Developing Palliative Care for HIV/AIDS Patients Julie Dixon, AIDS Foundation East-West (AFEW)

1. Developing Palliative Care for HIV/AIDS Patients Julie Dixon, AIDS Foundation East-West (AFEW) Kyiv, Ukraine, February 2004

2. HIV/AIDS in EE/FSU/CAR (UNAIDS) • PLWHA: • 1999  420000 • 2000  700000 • 2001  1000000 • 2002  1200000 • Steepest HIV growth curve worldwide in 1999-2000 • Increase mainly among youth: • Injecting drug users (IDUs) • Heterosexual transmission • Mother-to-child transmission

3. Officially Registered Cases of HIV/AIDS in the RF, Ukraine and Kazakhstan through November 2003

4. Forecast for NIS Region • Number of infections: • 2002  1.2 - 1.8 million • 2006  5 million • 2010  5 to 8 million (6 to 11% of adult population) • 50 to 60% under 30 years • SIGNIFICANT impact on labor force

5. ‘The countries of the former Soviet Union and Eastern Europe are experiencing the fastest-growing epidemic in history, yet it is the most under-addressed in terms of response’. -- Peter Piot, UNAIDS Gen. Dir.

6. Realities of HIV/AIDS Care • No longer a fatal illness and can be a manageable chronic disease • Even with HAART, AIDS maintains high morbidity and mortality rates among youth • Healthcare professionals must learn about palliative care in order to optimise the quality of life for patients • Excellent HIV care can be provided by integrating principles of palliative care into regular delivery of care and services

7. Changes in HIV/AIDS Care • With HAART provision, full return to a functional and healthy life can be achieved • End of life progression of illness now resembles a typical course of chronic illnesses such as congestive heart failure, chronic obstructive pulmonary disease, or hepatic cirrhosis

8. Developing Comprehensive Palliative Care Goals: • To create accessible and convenient care for patients regardless of location • Reduce pain and suffering of patients as much as possible • Decrease burden on caregivers (whether healthcare professionals, family, friends, etc.)

9. Components for a Comprehensive PC Programme • Pain Control • Nutrition, Vitamins • Prevention/Treatment of Opportunistic Infections • Symptom Management • Counselling/Psycho-social Support • Wrap-around services

10. Things to Remember • For patients, the future is uncertain as they physically and psychologically adapt to the prognosis of a long-term illness • Medical adherence remains most important to stabilise the disease and its symptoms • Minimising disruption in patients’ lives is a crucial component of palliative care

11. Multi-disciplinary Model of Care Care provided by variety of persons: • Healthcare professionals of various types • Psycho-social support • Nutritionist • Physical therapist • Spiritual leader & support • Family & friends • Volunteer community workers • Alternative healer

12. Different Approaches • Primary-case based support • Spiritual motivation & guidance • Moral support from local leaders • Focus on marginalised groups (such as IDUs, sex workers) • Top-down versus community-initiated approach

13. Common Barriers • Shortage of healthcare professionals and social workers • Inadequate capacity for PC training • Inadequate availability of pain relief medication • Shortage of space for long-term care • Increased burden of care among caregivers • Inadequate number of hospices, day care centres

14. Alternatives to Hospital Care 1) Hospice 2) Day Care Centres 3) Home-Based Care

15. Hospice Care Can… • Be provided for any life-limiting disease, not just cancer or AIDS • Be in a home, hospital, long-term facility, or other residential setting • Teach families and community care workers how to provide for the needs of the patient • Provide expanded services such as bereavement and after-care planning for children and family members

16. Day Care Centres • Provide a place to take patients during the day for care and support • Services include medicinal therapies, classes and social activities • Good vehicles for monitoring symptoms, ARV regimen and pain

17. Home-Based Care WHO definition: • The provision of health services by formal and informal caregivers in the home in order to promote, restore and maintain a person’s maximal level of comfort, function and health towards a dignified death. • Home care services can be classified into preventive, promotive, therapeutic, rehabilitative, long-term maintenance and palliative care categories.

18. Home-Based Care , cont. • Home-based care provides an alternative to institutionalised healthcare. Discharging patients into a home care programme allows for a shorter stay at the hospital, making more beds available for other patients and reducing costs. • Patients are often unable to travel to a clinic for treatment • More cost-effective for healthcare system and patient

19. Home-Based Care, cont. • Allows AIDS patients to remain in the community, fostering better understanding of HIV/AIDS within families and the community • Particularly important in developing countries where there is a shortage of hospital beds, inability to afford prophylactic drug therapies, and poor nutrition

20. How is HBC Cost-Effective? • For patients who cannot afford specialised medical treatment or prolonged hospitalisation • Family members are usually willing to nurse the patient and once trained, often become effective caregivers • Reduces the pressure on over-extended medical personnel in hospitals

21. Pain Management • Often under-diagnosed and under-treated in AIDS patients • Many types are under-utilised • Fully possible to treat effectively, including substance users • Opioid analgesics – to manage acute pain • Dosage depends on patient and level of pain • Risk of tolerance and physical and/or psychological dependence

22. Pain Management, cont. WHO Recommended Strategy: • Create national policies that support pain relief through governmental endorsement • Create educational programmes for general public, healthcare professionals, etc. • Improve infrastructure and availability of drugs (especially analgesic opioids)

23. Key Resources • Local NGOs providing Home-Based Care (ex., Life + in Odessa) • Kyiv Oncological Hospice • Open Society Institute • World Health Organisation • European Association for Palliative Care • HIV/AIDS Bureau – Health Resources and Services Administration

24. AIDS Foundation East-West (AFEW) Tel. +7 095 250 6377, Fax: +7 095 2506387 E-mail: julie_dixon@afew.org Website: www.afew.org