Palliative Care in HIV/AIDS – a South African perspective Liz Gwyther MB ChB, MFGP, MSc Pall Med

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

WHO Definition of Palliative Care Sepulveda et al. JPSM 2002; 24: 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.

Some of the key principles of palliative care  Patient & family-centredness,  Respect for patient autonomy  Restoring a sense of control for the patient

Palliative care: patient & family- centred care  Palliative care is an integral part of every health care professional’s 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?

Palliative care: WHO definition (cont)  Affirms life and regards dying as a normal process

 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”

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

 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.

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

What is the palliative care response?

Palliative care: WHO 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

Integration of Palliative and curative care  “HAART and palliative care are not ‘either-or’ options but ‘both-and’ essentials in HIV management” O’Neill, Barini-Garcia

Palliative care in the developing world DiagnosisDeath Primary Health Care/Specialist Care Hospice Palliative Care Disease-oriented care Supportive & Palliative Care Bereavement care Care of orphans Impacts on Individual, Family, community Adapted from WHO Defilippi, Gwyther 2002

Reality HAART Palliative care Management of OIs, little or no Sx Mx Bereavement care

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

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 CD 4 patients (prevent/manage IRIS)

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

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

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

End of Life care  Control of distressing symptoms  Provide physical comfort in patient’s choice of place of care  Dignity in death  Support in bereavement for family and loved ones

PALLIATIVE CARE DELIVERY Hospice 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

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

IPU Professional Nurse IDT IDT Home Based Carer PATIENT & FAMILY Patient Care Supervision Training & Education Continuum of Care Home Care IPUcare

HOSPITAL/ CLINIC/GP/ specialist HOSPICE/CBO COMMUNITY Integrated Community-based Home Care Model (HPCA)

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

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

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

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

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

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.

APCA

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

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?

Caring for the carers  Family carers  Home-based carers  Professional carers  Adequate training  Supervision  Support, including peer support  Improve morale

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

Time to Deliver 1. Prevention – broad prevention strategies 2. HAART with adequate infrastructure and training, patient support and motivation 3. Integration of Comprehensive Palliative Care into HIV programs

Thank you