1. Institut Català d’Oncologia ICO DiR. The ‘Qualy’ End of Life Care Observatory - WHO Collaborating Centre for Public Health Palliative Care Programmes The Catalonia WHO Demonstration Project on Palliative Care implementation: results at 20 years X Gómez-Batiste MD, PhD The ‘Qualy’ End of Life Care Observatory WHO Collaborating Centre for Public Health Palliative Care Programmes Institut Català d’Oncologia 10 th March 2011.

2. Institut Català d’Oncologia Background 80’s Eric Wilkes (Sheffield) Vittorio Ventafridda (Milano) Jan Stjernsward (WHO) Kathy Foley (OSI, NY) Palliative Care as a Public Health topic

3. Institut Català d’Oncologia Catalonia / Barcelona

4. Institut Català d’Oncologia Catalonia 2009 7.500.000 inhabitants (4.5 in Metropolitan Barcelona) > 65 years: 17% 60.000 people with dementia 130.000 elderly with pluripatology and dependency Mortality rate: 9 / 1.000 Life expectancy: 79 m / 82 f

5. Institut Català d’Oncologia Catalonia 2009 Autonomous Government, Parliament, and Regional DoH HCS: Free of charge, universal, accesible Acute beds: 18.000 Socio-Health (geriatric, chronic, dementia, RHB and palliative care): 7.000 beds Nursing homes: 50.000 beds Primary care: Health care centers

6. Institut Català d’Oncologia Catalonia: Mortality / prevalence Mortality Global : 60.000 Cancer : 16.000 Noncancer chronic: 24.000 Total chronic conditions: 40.000 Prevalence terminal patients: Cancer: 4.000 (mean survl 3 months) Other conditions: 18.000 (mean sl 9 months) Total: 22.000 Estimation based in McNamara, 2006

7. Institut Català d’Oncologia Quantitative analisys: JPSM, 2007

8. Institut Català d’Oncologia Care Resources 2009 (Total: 236) PADES: 74 HSTs: 49 PCUs: 60 Outps: 50 Other: 10

9. Institut Català d’Oncologia Resources CP Cat 2009 DIRECT PC Services Acute: 32 Non Acute: 27 Total: 59 Outpatients CExt EIAIA: 22 CExt convenc: 28 Total: 50 Hospital Support Teams 38Total: 38 Home Support Teams 74Total: 74 Psicosocial Support Teams 5Total: 5 Other 5 5 TOTAL 231 INDIRECT Planning Research Knowledge Training Dpment of Health - PDSS Catalan Institute of Oncology – Training & Research Dpments The ‘Qualy’ Observatory/WHOCC 5 TOTAL SPECIFIC RESOURCES PC 236

10. Institut Català d’Oncologia Specialist servicesAdditional processes / yearOther relevant outputs CARE SERV ICES Home Care Support Teams 72 1 / 110,000 citizens Processes: 13,000  % Cancer / non-cancer: 49 / 51  Mean age: 76  Death at home: 68%  Duration of intervention: 80 days PCUs in Socio- Health Centers PCUs: 28 Beds: 383 Processes: 6,300 Total PCUs: 60 Total beds: 742 (110 beds / million) Processes: 10,450  Mean age: 74  Length of stay: 20.3 days  Mortality: 72.9% PCUs in Nursing Homes PCUs: 27 Beds: 319 Processes: 3,150  Mean age: 82  Length of stay: 35 days  Mortality: 85% PCUs in Acute Bed Hospitals PCUs: 5 Processes: 1,000  Cancer 80%  Mean age: 61  Length of stay: 11d  Mortality: 55% Hospital Support Teams 49Processes: 10,700  Cancer / non-cancer: 60 / 40  Mean Age: 73  Length of stay: 10 days Psychosocial Support Teams 6Processes: 1,500  Cancer 80% Outpatient Clinics50Processes: 9,000  Cancer / non-cancer: 60 / 40 TOTAL CARE SERVICES: 237TOTAL CARE PROCESSES: 46,200 (2 / patient) Other Services (4) - Team at the Department of Health - Education and Training Unit (ICO) - The ‘Qualy’ EoL Observatory / WHOCC (ICO) - Clinical Research Team (ICO) Specialist Services: 241 Full time Doctors: 240 (32.8 / million) Total Patients: 23,100; Cancer: 12,100 (52%); Non-cancer: 11,000 (48%) Coverage: Cancer: 73.3%; Non-cancer: 31% -58%; Geographic area cover: 100%

11. Institut Català d’Oncologia Catalonia 2010 Coverage (geographic): 100% Coverage cancer: 73% Coverage non cancer: 40-56% (*) Proportion cancer/noncancer : 50% Nº Dispositives: 236 Beds/milion: 101.6 Full time doctors: 220 (30 / milion) (*) McNamara, 2006

12. Institut Català d’Oncologia Training 423 health-care professionals (60% doctors and 40% nurses) have been taught PC to Master’s degree level at the University of Barcelona. All nursing schools, 50% of medical and social work schools now include modules of PC. Most family doctors (General Practitioners) have a PC stage of 1 or 2 month’s duration inserted in their specialist training.

13. Institut Català d’Oncologia Training Primary care Coverage of PC training in primary care professionals: 70.5% Advanced/Master’s degree 3.4% Intermediate 15.2% Basic level 51.9%

14. Institut Català d’Oncologia Populational impact 1990-2005 - More than 250.000 patients attended - More than 900.000 persons (14% of population) in direct contact with palliative care services

15. Institut Català d’Oncologia Cost/efficiency Type of serviceCalculationSubtotal / typeEstimated savings; Euros HCST229,000 x 72 services 16,488,000 (31%) TOTAL SAVINGS: 3,000 / patient x 23,100 = 69,300,000 HST279,000 x 49 services 13,671,000 (26%) PCU96 x 209,000 stays20,064,000 (38%) OUTPAT155 x 9,000 processes 1,395,000 (3%) PST190,000 x 5 services 950,000 (2%) TOTALTOTAL COSTS: 52,568,000 / year NET SAVINGS: 16,732,000 / year

16. Institut Català d’Oncologia Evaluations of the Catalonia WHO Demonstration Project: Methods - External evaluation of indicators (Suñol et al, 2008) - SWOT nominal group of health-care professionals (Gomez-Batiste et al, 2007) - Focal group of relatives (Brugulat et al, 2008) - Benchmark process (2008) (Gomez-Batiste et al, 2010) - Efficiency (Serra-Prat et al 2002 & Gomez-Batiste et al 2006) - Effectiveness (Gomez-Batiste et al, J Pain Symptom Manage 2010) - Satisfaction of patients and their relatives (Survey CatSalut, 2008)

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20. Efectpal (111 teams): Results Symptoms day 1 day 7 (p < 0.001) R Roca, PhD 2007 Effectiveness: Efectpal

21. Institut Català d’Oncologia Efficiency of PCSs Multicenter longitudinal study on the use of resources by cancer patients attended by PCSs Comparison with previous use without PCSs 171 teams / 395 patients

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23. COMPARISON 1992-2002: USE/COST OF RESOURCES INGR: % malalts / ESTMITJ: dies / URGENC: %malalts COST: euros x 100 (XGB et al, 2006)

24. Institut Català d’Oncologia

25. Dimensions of PCPHPs Coverage Access / equity / availability / continuity Quality of services Sectorised coordination Opioids Professionals Education and Training Evaluation Research Financing Other…….

26. Institut Català d’Oncologia Qualitative analisys: results Strong Points Region of 7.3 milion habs High coverage cancer, relative noncancer, and geographical High coverage home care cancer and non cancer Professional’s committment Public Health Planning Insertion in the HCS, diversity, models Effectiveness Efficiency Satisfaction Weak Points Low coverage noncancer, inequity variability, sectors and services (specific and conventional) Difficulties in access and continuing care (weekends) Late intervention Evaluation, emotional support, bereavement, Professionals: low income, support, and academic recognition Financing model and complexity Research and evidence

27. Institut Català d’Oncologia Proposals

28. Institut Català d’Oncologia General Indicators (20) Hospitalization Services Day Care & Support Teams OUTPATIENTS (5) HOME SUPPORT TEAMS (6) HOSPITAL SUPPORT TEAMS (7) DAY CARE (6) MEDIUM- STAY (6) LONG- STAY (7) PAL LIATIVE (5) Indicators per device Indicators per Care line INDICATORS MODEL PAL

29. Institut Català d’Oncologia Models in Demographic settings

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31. Organic Law 6/2006 of the 19th July, on the Reform of the Statute of Autonomy of Catalonia ARTICLE 20. THE RIGHT TO UNDERGO THE PROCESS OF DEATH WITH DIGNITY 1. Each individual has the right to receive appropriate treatment of pain and complete palliative attention and to undergo the process of death with dignity. 2. Each individual has the right to express his or her will in advance in order to record instructions regarding any medical treatment or intervention that he or she may undergo. These instructions must be respected especially by medical staff, in accordance with the terms established by the law, if the individual is not able to express his or her wishes personally. The Parliament of Catalonia

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33. ICO DiR. The ‘Qualy’ End of Life Care Observatory - WHO Collaborating Centre for Public Health Palliative Care Programmes. The ‘Qualy’ End of Life Care Observatory WHO Collaborating Centre for Public Health Palliative Care Programmes whocc.info@iconcologia.net +34 93 260 77 36 ICO l’Hospitalet Hospital Duran i Reynals Gran Via de l’Hospitalet, 199-203 08908 l’Hospitalet de Llobregat Institut Català d’Oncologia