The Role of Palliative care in the era of Anti Retroviral treatment

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The Role of Palliative care in the era of Anti-
Retroviral treatment

• Dr. Siobhan Kennelly
• Hospice Africa Uganda

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Introduction

• What Is Palliative Care ?
• What is the general role of palliative care?
• What is the role of palliative care in HIV/AIDS
  care in the setting of ART ?
• Integration of Palliative care and ART services

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Exploding the Myths about Palliative Care

• Not an active treatment
• Only of use when all other curative options
  have been exhausted
• Terminal care
• Morphine

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WHO Definition 2002

• 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
• Prevention and relief of suffering by means of
  early identification and effective assessment and
  treatment of pain and other problems, physical,
  psychosocial and spiritual.
• A multi-disciplinary team approach to address the
  needs of patients and their families, including
  dignity in dying and bereavement support.

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Physical
Spiritual
Social / Cultural
Family
Psychological
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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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Total Pain
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General Role of Palliative Care
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Role of Palliative care in patients on ART
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Exploring the role of PC in the setting of ART

• Availability of Antiretroviral treatment changing
  the Palliative care environment
• Still not curative
• Patients still have pain-control needs

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General role of Palliative Care in HIV/AIDS

• Clinical Care involves-
• Patient-centred care- multiple models of delivery
• Provision of pain relieving medicines
• Chemoprophylaxis
• Diagnosis and treatment of opportunistic
  infections
• Referral to/provision of ART programs

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Clinical Care

• Treatment of HIV-Associated cancers (including
  those that occur in children)
• ART treatment failure
• End-of-life care

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Psychosocial Care

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

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

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HIV and Malignancies

• CDC AIDS Defining cancers
• KS
• Non-Hodgkins Lymphoma
• Invasive cervical cancer
• (SCC Conjunctiva)
• Aggressive clinical behaviour, more advanced
  stage, shortened survival.

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Kaposis Sarcoma

• 1st described by Moritz Kaposi in 1872
• Several epidemiological types classic, African
  KS (endemic), immunosuppressive
  treatment-related, epidemic, non-epidemic gay
  related KS
• In Uganda Before HIV/AIDS 9 of tumors in men
  were KS, very rare in females after AIDS 50KS
  in men, 2nd commonest(20) females

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Effect of ART on Cancer Incidence in Western
Studies

• HAART has led to decreased incidence of OI, KS
  primary CNS lymphoma. In one European study
  incidence of AIDS-defining illnesses decreased
  from 30.7/100 pt-yrs in 1994 to 2.5/100 pt-yrs in
  1998 but NHL increased. (Mocroft et al .Lancet
  356291-6, 2000).
• Surveys yet to be carried out in patients from
  developing countries
• Longer follow-ups and epidemiological studies
  needed to characterize risk of lymphoma in HIV
  infected people.

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Issues for HIV-related Cancer in Uganda

• Issues of actual HIV-related cancer incidence and
  prevalence still to be addressed.
• Routine testing for HIV in cancer patients not
  yet available
• Access to basic cancer treatment remains a
  problem for most Ugandans
• Issues of affordability and infrastructure

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HIV-related Cervical Cancer
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Disseminated KS
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Opportunistic Infections

• Pain incidence in those with Opportunistic
  Infections
• Implications of severe / under-treated pain or
  symptom control in patients who need to take ART
• General Access of Patients to ART at district
  level

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Reasons For Referral for HIV Patients attending
HAU,Makindye
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Reasons for Referral while on ART
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Who can provide palliative care?

• Informal Health Sector
• Families and Caregivers
• Community Volunteers
• Traditional Healers

• Formal Health Sector
• Health professionals
• Allied Health Professionals

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Way Forward

• Education of Formal and Informal Healthcare
  Sector in PC
• Development of Palliative Care Standards
• Drug Availability
• PCAU
• Development of strong networks between agencies
  providing ART, support care and palliative care
• Sensitization and advocacy at community level and
  above

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Summary

• HIV patients receiving and not receiving ART have
  palliative care needs
• Need to integrate ART provision and palliative
  care, particularly for those with HIV related
  cancer, pain and symptom problems and those who
  fail available treatment.

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Thank You