Palliative Care, an Integral Component of HIV/AIDS Management Anteneh Habte, MD Medical Director, Palliative Care Unit Veterans Affairs Medical Center, Martinsburg, WV OWN, SCALE-UP & SUSTAIN The 16th International Conference on AIDS & STIs in Africa 4 to 8 December 2011, Addis Ababa www.icasa2011addis.org

Palliative Care in the continuum of HIV/AIDS management The 16th International Conference on AIDS & STIs in Africa, Addis Ababa POINTS OF DISCUSSION Palliative Care in the continuum of HIV/AIDS management Challenges and Opportunities Role of the Diaspora OWN, SCALE-UP & SUSTAIN The 16th International Conference on AIDS & STIs in Africa 4 to 8 December 2011, Addis Ababa www.icasa2011addis.org

66% of the cases in sub-Sahara Africa The 16th International Conference on AIDS & STIs in Africa, Addis Ababa The Problem The worst epidemic of the 20th century with a fatality of 35 million to date 34 million people known to be living with the disease as of the end of 2010 66% of the cases in sub-Sahara Africa 1.3 million of the estimated 1.9 million deaths in 2009 occurred in this region OWN, SCALE-UP & SUSTAIN The 16th International Conference on AIDS & STIs in Africa 4 to 8 December 2011, Addis Ababa www.icasa2011addis.org

The 16th International Conference on AIDS & STIs in Africa, Addis Ababa The Problem Access to ART limited to less than 40% in sub-Saharan Africa, despite dramatic expansion in availability over the last decade. High symptom burden Distressing symptoms from disease itself, OI, ART and co-morbid conditions OWN, SCALE-UP & SUSTAIN The 16th International Conference on AIDS & STIs in Africa 4 to 8 December 2011, Addis Ababa www.icasa2011addis.org

The 16th International Conference on AIDS & STIs in Africa, Addis Ababa OWN, SCALE-UP & SUSTAIN The 16th International Conference on AIDS & STIs in Africa 4 to 8 December 2011, Addis Ababa www.icasa2011addis.org

Increased Caregiver burden The 16th International Conference on AIDS & STIs in Africa, Addis Ababa The Problem Increased Caregiver burden More patient dying with rather than from HIV/AIDS More nuanced discussions about goals of care and benefit Vs burden of treatment OWN, SCALE-UP & SUSTAIN The 16th International Conference on AIDS & STIs in Africa 4 to 8 December 2011, Addis Ababa www.icasa2011addis.org

Ancient concept, rest place for travelers The 16th International Conference on AIDS & STIs in Africa, Addis Ababa HOSPICE CARE Ancient concept, rest place for travelers By the end of the 19th century for terminally ill First modern Hospice in UK by Dr. Saunders in 1967 Medicare Hospice benefit in the US in 1982 OWN, SCALE-UP & SUSTAIN The 16th International Conference on AIDS & STIs in Africa 4 to 8 December 2011, Addis Ababa www.icasa2011addis.org

Worked well when HIV/AIDS meant quick decline and was invariably fatal The 16th International Conference on AIDS & STIs in Africa, Addis Ababa HOSPICE CARE Worked well when HIV/AIDS meant quick decline and was invariably fatal Interdisciplinary care Improved symptom control and patient satisfaction OWN, SCALE-UP & SUSTAIN The 16th International Conference on AIDS & STIs in Africa 4 to 8 December 2011, Addis Ababa www.icasa2011addis.org

Difficulty prognosticating Referral late in disease stage The 16th International Conference on AIDS & STIs in Africa, Addis Ababa HOSPICE CARE Difficulty prognosticating Referral late in disease stage Strict criteria must be met for benefits Stigma of “giving up/abandonment” OWN, SCALE-UP & SUSTAIN The 16th International Conference on AIDS & STIs in Africa 4 to 8 December 2011, Addis Ababa www.icasa2011addis.org

FALSE DICHOTOMY OWN, SCALE-UP & SUSTAIN The 16th International Conference on AIDS & STIs in Africa, Addis Ababa FALSE DICHOTOMY Traditional Dichotomy of Curative and Palliative Care for Incurable Disease OWN, SCALE-UP & SUSTAIN The 16th International Conference on AIDS & STIs in Africa 4 to 8 December 2011, Addis Ababa www.icasa2011addis.org

Offered through continuum of care The 16th International Conference on AIDS & STIs in Africa, Addis Ababa PALLIATIVE CARE Offered through continuum of care Does not preclude disease curing/modifying treatment Offered in various settings Relieves distressing symptoms and defines goals of care OWN, SCALE-UP & SUSTAIN The 16th International Conference on AIDS & STIs in Africa 4 to 8 December 2011, Addis Ababa www.icasa2011addis.org

INTEGRATED CARE OWN, SCALE-UP & SUSTAIN The 16th International Conference on AIDS & STIs in Africa, Addis Ababa INTEGRATED CARE OWN, SCALE-UP & SUSTAIN The 16th International Conference on AIDS & STIs in Africa 4 to 8 December 2011, Addis Ababa www.icasa2011addis.org

The 16th International Conference on AIDS & STIs in Africa, Addis Ababa HOSPICE vs. PALLIATIVE CARE HOSPICE Palliative Care VS All hospice care is palliative care but not all palliative care is hospice care OWN, SCALE-UP & SUSTAIN The 16th International Conference on AIDS & STIs in Africa 4 to 8 December 2011, Addis Ababa www.icasa2011addis.org

Hospital based in-patient Unit The 16th International Conference on AIDS & STIs in Africa, Addis Ababa MODELS OF PALLIATIVE CARE DELIVERY Hospital based in-patient Unit Hospital Based Consult Service Ambulatory/Clinic Based Care OWN, SCALE-UP & SUSTAIN The 16th International Conference on AIDS & STIs in Africa 4 to 8 December 2011, Addis Ababa www.icasa2011addis.org

Home Based Palliative Care Hospice Care The 16th International Conference on AIDS & STIs in Africa, Addis Ababa MODELS OF PALLIATIVE CARE DELIVERY Home Based Palliative Care Hospice Care All are inter-disciplinary with the essential components Total Pain Concept OWN, SCALE-UP & SUSTAIN The 16th International Conference on AIDS & STIs in Africa 4 to 8 December 2011, Addis Ababa www.icasa2011addis.org

Improved control of distressing symptoms Lower health care cost The 16th International Conference on AIDS & STIs in Africa, Addis Ababa EVIDENCE BASE FOR PALLIATIVE CARE/HOSPICE Improved control of distressing symptoms Lower health care cost Decreased hospitalizations and ER visits Increased patient and family satisfaction OWN, SCALE-UP & SUSTAIN The 16th International Conference on AIDS & STIs in Africa 4 to 8 December 2011, Addis Ababa www.icasa2011addis.org

Reduced incidence of prolonged grief and PTSD The 16th International Conference on AIDS & STIs in Africa, Addis Ababa EVIDENCE BASE FOR PALLIATIVE CARE/HOSPICE Reduced incidence of prolonged grief and PTSD Improved clinical and quality of care outcomes Defined Goal of Care Longer median survival demonstrated in randomized trials in patients with metastatic NSCLC, advanced COPD and CHF OWN, SCALE-UP & SUSTAIN The 16th International Conference on AIDS & STIs in Africa 4 to 8 December 2011, Addis Ababa www.icasa2011addis.org

Strong social network and spiritual base The 16th International Conference on AIDS & STIs in Africa, Addis Ababa OPPORTUNITIES Strong social network and spiritual base Expanding Health Care delivery system Part of the continuum of care OWN, SCALE-UP & SUSTAIN The 16th International Conference on AIDS & STIs in Africa 4 to 8 December 2011, Addis Ababa www.icasa2011addis.org

Role for non-skilled workers and volunteers The 16th International Conference on AIDS & STIs in Africa, Addis Ababa OPPORTUNITIES “High touch, low Tech” Task shifting Role for non-skilled workers and volunteers OWN, SCALE-UP & SUSTAIN The 16th International Conference on AIDS & STIs in Africa 4 to 8 December 2011, Addis Ababa www.icasa2011addis.org

High morbidity and mortality across all age groups The 16th International Conference on AIDS & STIs in Africa, Addis Ababa CHALLENGES High morbidity and mortality across all age groups 130,000 AIDS related deaths in Ethiopia in 2010 only High symptom burden with life threatening illnesses OWN, SCALE-UP & SUSTAIN The 16th International Conference on AIDS & STIs in Africa 4 to 8 December 2011, Addis Ababa www.icasa2011addis.org

Lack of National Policy The 16th International Conference on AIDS & STIs in Africa, Addis Ababa CHALLENGES Limited resources Lack of National Policy Inadequate availability/accessibility of essential drugs for symptom control OWN, SCALE-UP & SUSTAIN The 16th International Conference on AIDS & STIs in Africa 4 to 8 December 2011, Addis Ababa www.icasa2011addis.org

The 16th International Conference on AIDS & STIs in Africa, Addis Ababa OWN, SCALE-UP & SUSTAIN The 16th International Conference on AIDS & STIs in Africa 4 to 8 December 2011, Addis Ababa www.icasa2011addis.org

Morphine Equivalence Metric as a surrogate for good pain control The 16th International Conference on AIDS & STIs in Africa, Addis Ababa CHALLENGES Morphine Equivalence Metric as a surrogate for good pain control Morphine utilization <0.0004mg/capita for Ethiopia as compared to 75mg/capita for the US OWN, SCALE-UP & SUSTAIN The 16th International Conference on AIDS & STIs in Africa 4 to 8 December 2011, Addis Ababa www.icasa2011addis.org

Advocating for a National Palliative Care Policy The 16th International Conference on AIDS & STIs in Africa, Addis Ababa ROLE OF THE DIASPORA Advocating for a National Palliative Care Policy Promoting availability and accessibility of essential drugs Partnership with pubic/private entities and government offices to promote hospice and palliative care Participation in the National Palliative Care Association OWN, SCALE-UP & SUSTAIN The 16th International Conference on AIDS & STIs in Africa 4 to 8 December 2011, Addis Ababa www.icasa2011addis.org

Training mid level Providers and Health Care Workers The 16th International Conference on AIDS & STIs in Africa, Addis Ababa ROLE OF THE DIASPORA Training mid level Providers and Health Care Workers Curriculum development for Medical Schools and Residency Programs Organizing Workshops and Symposia to enhance the visibility of Palliative Care and Hospice OWN, SCALE-UP & SUSTAIN The 16th International Conference on AIDS & STIs in Africa 4 to 8 December 2011, Addis Ababa www.icasa2011addis.org

Training mid level Providers and Health Care Workers The 16th International Conference on AIDS & STIs in Africa, Addis Ababa ROLE OF THE DIASPORA Training mid level Providers and Health Care Workers Curriculum development for Medical Schools and Residency Programs Organizing Workshops and Symposia to enhance the visibility of Palliative Care and Hospice OWN, SCALE-UP & SUSTAIN The 16th International Conference on AIDS & STIs in Africa 4 to 8 December 2011, Addis Ababa www.icasa2011addis.org

Supporting clinical services The 16th International Conference on AIDS & STIs in Africa, Addis Ababa ROLE OF THE DIASPORA Supporting clinical services Support the establishment of a center of excellence for clinical service, teaching and research OWN, SCALE-UP & SUSTAIN The 16th International Conference on AIDS & STIs in Africa 4 to 8 December 2011, Addis Ababa www.icasa2011addis.org

Existing Network of Counterparts The 16th International Conference on AIDS & STIs in Africa, Addis Ababa ROLE OF THE DIASPORA Existing Network of Counterparts Sustainable/reliable with personal stake in success New World Bank initiative to engage the Diaspora as a group Institutional affiliation/partnership OWN, SCALE-UP & SUSTAIN The 16th International Conference on AIDS & STIs in Africa 4 to 8 December 2011, Addis Ababa www.icasa2011addis.org

Different paradigm, the ultimate twinning The 16th International Conference on AIDS & STIs in Africa, Addis Ababa ROLE OF THE DIASPORA Different paradigm, the ultimate twinning Sharing expertise and experience and adopting to local needs and resources Unique perspective with common heritage, language, culture OWN, SCALE-UP & SUSTAIN The 16th International Conference on AIDS & STIs in Africa 4 to 8 December 2011, Addis Ababa www.icasa2011addis.org

The 16th International Conference on AIDS & STIs in Africa, Addis Ababa “To cure sometimes, to relieve often, to comfort always…this is our work” -Anonymous OWN, SCALE-UP & SUSTAIN The 16th International Conference on AIDS & STIs in Africa 4 to 8 December 2011, Addis Ababa www.icasa2011addis.org