Developing Palliative Care for HIVAIDS Patients

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Developing Palliative Care for HIV/AIDS
Patients Julie Dixon, AIDS Foundation East-West
(AFEW) Kyiv, Ukraine, February 2004
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HIV/AIDS in EE/FSU/CAR (UNAIDS)

• PLWHA
• 1999 ? 420 000
• 2000 ? 700 000
• 2001 ? 1 000 000
• 2002 ? 1 200 000
• Steepest HIV growth curve worldwide in 1999-2000
• Increase mainly among youth
• Injecting drug users (IDUs)
• Heterosexual transmission
• Mother-to-child transmission

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

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• 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.

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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

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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

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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.)

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Components for a Comprehensive PC Programme

• Pain Control
• Nutrition, Vitamins
• Prevention/Treatment of Opportunistic Infections
• Symptom Management
• Counselling/Psycho-social Support
• Wrap-around services

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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

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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

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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

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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

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Alternatives to Hospital Care

• 1) Hospice
• 2) Day Care Centres
• 3) Home-Based Care

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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

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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

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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 persons 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.

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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

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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

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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

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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

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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)

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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

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AIDS Foundation East-West (AFEW)
Tel. [phone], Fax [phone]
6387 E-mail julie_dixon_at_afew.org Website
www.afew.org