The role of Homebased Palliative Care in the care of HIV patients in Uganda a case study

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The role of Home-based Palliative Care in the
care of HIV patients in Uganda a case study

• B Mandera, N Kadde,
• Clinical Palliative Care Nurses, Hospice Africa
  Uganda

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BACKGROUND

• Hospice Africa Uganda is a home-based palliative
  care program providing holistic care for patients
  with Cancer and HIV/AIDS

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Palliative care involves

• Relief of pain and distressing symptoms
• Freedom from pain is a Human Right WHO 1990
• Psychological and spiritual care
• Continued support of the patient through
  different phases of their illness
• Support of family /- carer through the illness
  and bereavement

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Physical
Spiritual
Social / Cultural
Family
Psychological
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PROJECT DESCRIPTION

• The program has been running since 1993
• Now operates three hospices,
• Hospice Africa Uganda, Makindye
• Mobile Hospice Mbarara
• Little Hospice Hoima
• Approximately eight thousand patients have
  benefited since the program began.

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Project Description

• Physical Care involves-
• Home-based care
• Provision of pain relieving medicines
• Chemoprophylaxis
• Diagnosis and treatment of opportunistic
  infections
• Referral to ART programs where appropriate

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Project description

• Emotional Support
• For the patient
• For the caregivers
• Social
• Nutritional assistance
• Financial assistance
• Networking with other support organisations

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• Spiritual Support
• - Non-denominational
• - Given as per patients wishes

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Case History

• 42yrs old male known HIV presented in 2003 with a
  six month history of-
• Weight loss
• Diarrhoea
• Fevers
• Multiple nodules on the face, trunk and lower
  limbs

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• In Mulago Hospital, was diagnosed with Kaposis
  Sarcoma
• Patient referred to Hospice Africa Uganda by team
  in Cancer Institute for pain and symptom control

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When seen at home initially by HAU..

• He was bed bound
• Being cared for by three young daughters
• Unable to move due to pain, especially in the
  lower limbs
• Had severe financial constraints
• Had given up hope

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Care Given

• Physical
• He complained of burning and stabbing pains
  in the lower limbs which were managed with liquid
  morphine and adjuvant medications
• Home visited on a weekly basis (and more often
  when necessary)
• Children taught basic nursing care skills and
  infection control

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Care Given

• Emotional
• Extensive counselling of patient and family re
  diagnosis and positive living.
• Counselled re making a will
• Child Support Organisation contacted for
  assistance with childrens needs (e.g. school
  fees)

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• Social
• Extra food for family provided on weekly basis
• Sponsor found for financial assistance with costs
  of chemotherapy
• Day care at Hospice when condition improved and
  was mobile

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Care Given

• He improved sufficiently to be able to access
  palliative chemotherapy
• Minimal side-effects of mucositis and diarrhoea
  which were managed by home-care team
• Commenced on Co-trimoxazole chemo prophylaxis.
• Tested and treated for pulmonary TB

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• He was successfully referred and enrolled onto
  an ART program six months after he had come on to
  HAU program CD4 count 162 on referral
• One of the first patients to benefit from free
  ART program at IDI

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• Developed some abdominal discomfort, and felt
  unwell on initial ART but this was successfully
  managed.
• Seen on weekly basis at day care
• Patient continues to have a good quality of life
  and is now back at work

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Summary

• The above case illustrates well the role for the
  integration of palliative care into the continuum
  of care for patients living with a diagnosis of
  HIV/AIDS- including those accessing ART.
• Palliative Care addresses holistic needs of
  patients with HIV/AIDS
• HAU continues to advocate for the provision of
  such care to all patients

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Summary

• Palliative care is a form of active treatment,
  helping people with HIV/AIDS to live and enjoy a
  good quality of life
• Much more than terminal care

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Thank You!