Palliative Care in HIVAIDS a South African perspective

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Palliative Care in HIV/AIDS a South African
perspective

• Liz Gwyther
• MB ChB, MFGP, MSc Pall Med

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Objectives

• Further develop our understanding of palliative
  care
• Promote the integration of palliative care into
  HIV management
• Discuss SA model of care
• Describe symptom management, psychosocial and
  spiritual care

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WHO Definition of Palliative Care Sepulveda et
al. JPSM 2002 24 91-96

• Palliative care is an approach that improves
  the quality of life of patients and their
  families facing the problems associated with
  life-threatening illness, through the prevention
  and relief of suffering by means of early
  identification and impeccable assessment and
  treatment of pain and other problems, physical,
  psychosocial and spiritual.

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Some of the key principles of palliative care

• Patient family-centredness,
• Respect for patient autonomy
• Restoring a sense of control for the patient

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Palliative care patient family-centred care

• Palliative care is an integral part of every
  health care professionals role
• Develop palliative care approach that is
  patient-centred
• Who sets the agenda for our consultations?
• What are the issues that worry our patients (
  family members)?
• Are patients empowered to talk about non-clinical
  issues?

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Palliative careWHO definition (cont)

• Affirms life and regards dying as a normal
  process

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• Sometimes our HIV positive patients die
• Can we predict who or when?
• HIV an ambushing disease
• We live in a society that avoids the death
  conversation

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• Our patients are afraid
• Our patients are lonely
• How do you respond when your patient asks Doc,
  am I going to die?

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• Palliative care creates a safe space to discuss a
  patients fears
• We need to have the courage not to avoid the
  conversation when our patients need to discuss
  difficult issues.

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Palliative Care at the end of life

• WHO Palliative care affirms life and regards
  dying as a normal process
• NB this is NOT true in the context of young
  adults, children/adolescents dying of
  AIDS-related conditions
• NB it is essential that we continue to advocate
  for access to HAART to prevent early death and
  orphanhood and to contribute to effective
  prevention strategies

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What is the palliative care response?
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Palliative careWHO definition (cont)

• Is applicable early in the course of illness, in
  conjunction with other therapies that are
  intended to prolong life, such as chemotherapy,
  radiation therapy, or antiretroviral therapy and
  includes those investigations needed to better
  understand and manage distressing clinical
  complications

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Integration of Palliative and curative care

• HAART and palliative care are not either-or
  options but both-and essentials in HIV
  management
• ONeill, Barini-Garcia

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Palliative care in the developing world
Bereavement care
Care of orphans
Disease-oriented care
Impacts on Individual, Family, community
Supportive Palliative Care
Diagnosis
Death
Hospice Palliative Care
Adapted from WHO Defilippi, Gwyther 2002
Primary Health Care/Specialist Care
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Reality
HAART
Palliative care
Management of OIs, little or no Sx Mx
Bereavement care
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How does palliative care enhance HIV care?

• Palliative Care as a Prevention Model
• Palliative Care and HIV treatment
• Palliative Care at the end of life

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Palliative Care as a Prevention Model

• Provides family and community education
• Provides entry to VCT
• Uses most powerful teaching moment
• Incorporates self-management programs
• Assists in planning future care of vulnerable
  children
• Prevents needless suffering
• 97 of patients with stage 4 HIV experience pain
  7 different causes of pain (Ref Norval, Hardman)
• Many South African in-patient hospice facilities
  are used by HIV physicians to initiate HAART in
  low CD4 patients (prevent/manage IRIS)

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Palliative Care and HIV treatment

• HAART most effective palliation of HIV
• HAART is not a cure for HIV
• will enhance the quality of life, and will also
  positively influence the course of illness (WHO
  definition)
• ARV Treatment support enhances adherence
• Aggressive management of OIs
• Management of distressing symptoms

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• Does access to ARVs mean we do not need
  palliative care for HIV patients?

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Reality

• ? Access to ARVs
• Serious/life-threatening side effects
• No longer able to take ARVs
• Dangerous misinformation or misunderstandings
• Nutrition as a substitute for ARVs
• Vitamins as a substitute for ARVs

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End of Life care

• Control of distressing symptoms
• Provide physical comfort in patients choice of
  place of care
• Dignity in death
• Support in bereavement for family and loved ones

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PALLIATIVE CARE DELIVERYHospice is not a
building, but a philosophy of care

• Home based care
• Outpatient care
• Outreach services e.g. Roadside Clinic
• Hospital based palliative care teams
• Day care
• Hospice inpatient care
• Clinic based palliative care
• Workplace programs

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Palliative care in the South African context
Most commonly home care Adapted traditional model
of domicillary palliative care with RN as primary
carerHome-based carer as primary
carer -supervision and support from RNSupported
by palliative care teamBack-up hospital beds,
in-patient unit - ensures continuum of care

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IPU care
IPU
Patient Care
Continuum of Care
IDT
Supervision
Professional Nurse
Home Based Carer
Home Care
PATIENT FAMILY
Training Education
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Integrated Community-based Home Care Model (HPCA)
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Case scenario

• Patient with oral oesophageal thrush
• Clinical response treat with fluconazole for 14
  days (donor program)
• Palliative care response treat with
  fluconazole, analgesia systemic local,
  nutritional advice, meaning of inability to take
  food, patient concerns

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Case scenario

• Patient with pneumocystis jeroveci pneumonia
• Clinical approach treat with high dose
  cotrimoxazole
• Palliative care approach treat cause, manage
  symptoms of cough and dyspnoea low dose morphine

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Pain control

• Assessment of pain, explanation to patient,
  disease modification
• Pain management according to WHO guidelines
• - by the mouth
• - by the clock
• - by the ladder
• For the individual
• Regular review

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WHO 3-step analgesic ladder
Strong opioids /- non-opioid /- adjuvant
Weak opioids /- non-opioid /- adjuvant
Step 3
Non-opioid /- adjuvants
Step 2
Step 1
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Psychological support

• Pre-bereavement grief
• Family support
• HIV -young patients, stigmatisation, other family
  members affected, confidentiality
• Multiple losses/bereavements
• Body image
• Support groups

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Social support

• ID book
• Loss of income
• Cost of care
• Will, next of kin
• Planning future care of potential orphans (memory
  box)
• Funeral arrangements
• Death certificates.

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Culturally sensitive care

• Culturally sensitive, respectful palliative care
  assists in reducing stigma in the community

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Spiritual support

• FICA spiritual assessment tool
• Dr Christina Puchalski, GWU
• F Faith/belief
• I Influence/Importance
• C Community to support
• A How can I as your doctor assist you?

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Caring for the carers

• Family carers
• Home-based carers
• Professional carers
• Adequate training
• Supervision
• Support, including peer support
• Improve morale

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Palliative care

• Physical care
• Active treatment including management of OIs
• Managing side effects
• Symptom management
• Psychosocial care
• Emotional support
• Social support
• Spiritual care

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Time to Deliver

• Prevention broad prevention strategies
• HAART with adequate infrastructure and training,
  patient support and motivation
• Integration of Comprehensive Palliative Care into
  HIV programs

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Thank you