Institut Català d’Oncologia The Basics of Palliative Care Models of Care and Settings of Care Kathleen M. Foley, MD October 26,2011 Brasov, Romania 1

Institut Català d’Oncologia 2002 WHO Definition of Palliative Care "Palliative care is an approach which improves quality of life of patients and their families facing 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" -2-

Institut Català d’Oncologia Palliative Care as a Public Health Issue affects all people need for better information on end-of-life care potential to prevent suffering potential to prevent disease 3

Institut Català d’Oncologia Palliative Care as a Prevention Model prevents needless suffering provides peer education provides patient centered care incorporates self-management programs 4

Institut Català d’Oncologia UNAIDS Report 40 million living with HIV/AIDS million in sub-saharan Africa 14 million orphans worldwide -11 million in sub-saharan Africa 20 million have died since

Institut Català d’Oncologia Global Cancer Mortality 12.7 million patients diagnosed each year with cancer 7.6 million who die from cancer 29 million cancer survivors 6

Institut Català d’Oncologia Global Cancer Mortality (millions/yr ) Data Source: World Bank 7

Institut Català d’Oncologia Tuberculosis Global Facts In 2009: 9.4 million new TB cases in million people died from TB in ,000 new MDR-TB cases 150,000 deaths from MDR-TB -8-

Institut Català d’Oncologia Pediatric Palliative Care Worldwide there are 7-9 million children with life-limiting and life- threatening conditions requiring palliative care 80% live in resource-limited countries 9

Institut Català d’Oncologia Patient Populations Requiring Palliative Care Cancer Patients HIV/AIDS Patients Patients with MDR-XDR TB Frail Elderly patients with multiple comorbidities Patients with neurodegenerative diseases 10

Institut Català d’Oncologia The continuum of palliative care Diagnosis Death Therapies to modify disease (curative, restorative intent) Actively Dying Bereavement Care Life Closure Therapies to relieve suffering, improve quality of life 6m 11

Institut Català d’Oncologia Education Implementation Drug Availability WHO Public Health Model PolicyPolicy ContextContext ContextContext OutcomesOutcomes OutcomesOutcomes -12-

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Institut Català d’Oncologia Settings of Palliative Care Hospital Home Nursing Home/Rehabilitation Unit Pediatric Home Hospice Home 17

Institut Català d’Oncologia Models of Care Hospital- based palliative care ICU Cancer unit Neurologic unit Neonatal unit Home-based palliative care Nursing home palliative care Free standing hospice 18

Institut Català d’Oncologia Specific Resources / settings Units Support teams Outp’s / Day care Acute Hospitals Nursing homes Mid term and long term, RHB, (Sociohealth Centers) Hospices Community / home -19-

Institut Català d’Oncologia Types of services and Levels of complexity General measures in conventional Services (Hospitals, Primary care, Nursing homes, Emergencies, etc) Basic suport teams (home, hospitals, comprehensive) Reference: complexity+ training+ research Complete teams Units Transitional measures: individual Specialist nurses or consultants -20-

Institut Català d’Oncologia Standards of specific resources 1 support team at home / h beds/milion habitants (10-20% acute, 40-60% mid term, 20-30% nursing homes) full time doctors / milion habitants 1 team available in every hospital (units in teaching) Models of organization adapted to demographic scenarios: metropolitans, intermediate, or small sectors < Models in specific resources (cancer institutes, nursing homes, etc) XGB 2005, WHOCC,

Institut Català d’Oncologia Regional variations CountryServices* (n) Ratio of services to population 1:000s UK Iceland649 Ireland5083 Poland40695 France Hungary50202 Denmark18302 Belarus12813 Portugal101,050 Russia1251,146 Croatia31,517 Ukraine182,582 *A service here is defined as a service type: number of services courtesy of EAPC Task Force 22

Institut Català d’Oncologia Implementation strategies of services: initial phases To create a nucleus of solid experiences Combine different types: home, hospital, cancer, geriatric,…. Based in feasibility: active leaders, institutional comittment, …. Cathalitic measures: support teams, transitional, … Define services before starting implementation -23-

Institut Català d’Oncologia Models of organisation in demographic and geographic scenarios -24-

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Institut Català d’Oncologia Demographic and setting scenarios Demographic Rural Urban Rural-urban Metropolitan Settings Primary/community care Nursing homes Longterm / intermediate Hospitals: district general, university Cancer Institutes Adapt the organisation to needs and contexts -26-

Institut Català d’Oncologia. The ‘Qualy’ End of Life Care Observatory WHO Collaborating Centre for Public Health Palliative Care Programmes ICO l’Hospitalet Hospital Duran i Reynals Gran Via de l’Hospitalet, l’Hospitalet de Llobregat Institut Català d’Oncologia -27-