A. Catalonia World Health Organization Demonstration Project

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A. Catalnia Wrld Health Organizatin Demnstratin Prject In 1989, the Health Department f Catalnia (Spain) and the Cancer Unit at the WHO (Geneva) designed and planned a demnstratin prject fr implementatin f palliative care resurces and services, based n the WHO Public Health Mdel. The prject s aims were t: 1) implement palliative care services thrughut Catalnia (cancer/nn cancer) and 2) serve as a mdel fr ther cuntries/gvernments The bjectives f the Catalnia WHO Demnstratin Prject (WHO DP) were t achieve: public cverage fr cancer and nn-cancer patients, easy access t palliative care by every persn wh need it, equity in access acrss the regin, high quality palliative care that is effective and efficient. The prject was initiated at the end f 1990, and evaluated at 10, 15, and 20 years after initiatin. 114 115 116 The fllwing sectin sheds light n the implementatin elements and results f the Catalnia WHO prject ver a perid f 20 years. Overview Catalnia is ne f Spain's richest and mst highly industrialised regins. Abut 17% f the 7.3 millin ppulatin is lder than 65 years (2009). The life expectancy is 79 years fr men and 85 years fr wmen (2010). There are 59,500 deaths per year (2009), chrnic cnditins accunt fr mre than tw thirds f all deaths, (35,700 t 44,600 deaths): 28% f all deaths are due t cancer, and 32% t 47% are due t nncancer illnesses. Health care Catalnia is financed publicly and services are prvided by a mixture f public and nn-prfit rganizatins. Health care resurces include hspitals, an extended primary care system, and sci-health centres that care fr geriatric, terminally ill, and chrnically ill patients by ffering rehabilitatin, day-care and lng-term care. 117 Prject Implementatin Highlights T achieve the prject s bjectives, the fllwing elements f the WHO Public Health Mdel and related activities were implemented: 114 Gmez-Batiste et al. Spain: The WHO Demnstratin Prject f Palliative Care Implementatin in Catalnia: Results at 10 Years (1991 2001). J Pain Symptm Manage 2002; 24(2): 239-244. 115 Catalnia WHO Palliative Care Demnstratin Prject at 15 Years (2005). J Pain Symptm Manage 2007; 33(5): 584-590. 116 Gmez-Batiste et al. The Catalnia Wrld Health Organizatin Demnstratin Prject fr Palliative Care Implementatin: Quantitative and Qualitative Results at 20 Years. J Pain Symptm Manage 2012; 43(4): 783-793. 117 Gmez-Batiste et al. The Catalnia Wrld Health Organizatin Demnstratin Prject fr Palliative Care Implementatin: Quantitative and Qualitative Results at 20 Years. J Pain Symptm Manage 2012; 43(4): 783-793. 45 P a g e

1. Assessment f ppulatin needs Ppulatin needs fr palliative care were assessed befre initiating the prject and peridically t infrm planning and evaluatin f palliative care services. T estimate the size f the ppulatins in need f palliative care services, mrtality data and prevalence estimatins fr chrnic cnditins in Catalnia were used, assuming: A mean duratin f terminal status f 3 mnths fr cancer patients and 9 t 12 mnths fr nn-cancer patients, and That 60% t 70% f the patients dying frm cancer and 30% t 60% f patients with nn-cancer life-limiting illnesses need palliative care interventins (Optimal direct cverage). In 2009 the ppulatin needs assessment revealed that a ttal f 20,000 t 31,000 patients with chrnic cnditins needed palliative care (10,000 cancer patients and 10,000 t 21,000 nn-cancer patients). Knwing this infrmatin, the planning fr palliative care services was mdelled within the cntext f disease demgraphics, sciecnmics, and health care system structure and resurces f each f the 14 districts in Catalnia. 2. Restructuring the health services system Fr each district, a palliative care service mdel was develped. The mdel utlines the levels f palliative care services using varius demgraphic scenaris and prpses ways t integrate palliative care int the cnventinal health system using resurces that already exist in the district. Criteria t access each level/type f palliative care services were described. (See Table 2) Table 2 Demgraphic scenaris and prpsals f rganizatin f specialist palliative care services 46 P a g e

In 2010, there were 237 specialized palliative care services cmpared t nly 2 palliative care units in acute hspitals in 1989. A typical palliative care service includes: a 16-bed unit, an utpatient clinic, a day unit, and a hme care team. Palliative care services integrated int all levels f the health care system. Mre than 50% f services are prvided in a cmmunity setting, nevertheless 83% f hspitals prvide palliative care services. The number f dctrs prviding fulltime palliative care increased frm 118 in 2001 t 240 in 2010. Table 3 Catalnia WHO Prject- Palliative Care Services (1989-2010) Types f Palliative Care Services n 1989 2001 2005 2010 Hme care supprt teams* 0.5 52 70 72 Palliative care units 1 50 63 60 Hspital supprt teams 0.5 20 34 49 Outpatient clinics 14 50 Psychscial supprt teams 6 Ttal services 2 122 181 237 Lcatin f Palliative Care Services Hspital 2 31 NA 49 Scihealth centres 39 NA 60 Cmmunity 52 NA 128 Ttal services 2 122 181 237 Palliative care beds Ttal palliative care beds 523 552 742 Palliative care beds fr AIDS patients 53 NA NA 3. Develpment f a public financing system fr palliative services. Palliative care services including medicatins are ffered cmpletely free f charge at the pint f care. 4. Legislatin and standards Change/revise legislatin and standards gverning prvisin f services t ensure high quality, culturally sensitive, cnsistent and equitable services t all thse in need. Revise legislatin/plicies gverning availability and delivery f piid analgesics t supprt effective pain management in palliative care. Right f access t palliative care became a basic human right in the Catalan Gvernment s Statute n Health. In 1990, palliative care services were legislated by a gvernment decree. 47 P a g e

In 1993, the Catalan standards fr palliative care services were released. The standards emphasize multi-prfessinal care, advance care planning, cntinuing care, and case management as essential elements in service prvisin. In 1993, mrphine/pid availability and delivery were prmted by a decree f the Spanish Ministry f Health. 5. Training and educatin f primary health care prfessinals Training: Abut 70% f the primary care prfessinals received training in palliative care (3.4% up t Advanced/Master s degree, 15.2% intermediate, and 51.9% basic level). Educatin: A ttal f 423 health care prfessinals (60% physicians and 40% nurses) earned a Master s degree in palliative care at the University f Barcelna. All nursing schls, 50% f medical schls, and scial wrk curses nw include mdules f palliative care. Mst generalists have a 1-2 mnth palliative care curse included in their training. 6. Develp a mnitring and evaluatin strategy t drive quality imprvement The activities, utputs, and utcmes f the prject have been evaluated peridically ver 20 years. The results f 3 cmprehensive evaluatins were published in the Jurnal f Pain and Symptm Management. The prblems encuntered during implementatin were addressed thrugh imprvement actins. 7. Prmting research and innvatin Several palliative research and training units were established. Frm 1998 t 2010, five epidemilgical studies, three clinical trials, five bservatinal studies and 3 qualitative studies were cnducted. The gaps detected thrugh these studies prmpted prgram imprvement activities. The WHO established (QUALY) bservatry, a WHO Cllabrating Centre fr Public Health Palliative Care Prgrams, at the Catalan Institute f Onclgy t supprt ther cuntries in the develpment f palliative care prgrams as an element f public health element, and t generate evidence and knwledge in the field thrugh research. Prject Outcmes High cverage (indicating easy equitable access t care) -As f 2010, 100% f the ppulatin in Catalnia have access t a wide range f palliative care services that are available in acute care hspitals, sci-health centres, and in the cmmunity thrughut the 14 rural and urban districts. The 10 and 15 48 P a g e

year evaluatins als reprted high gegraphic cverage (~ 95%). This indicates easy equitable access t care by anyne wh needs it. -The palliative care cverage fr cancer is ne f the highest described- (>70%) -Between 30-50% f advanced geriatric and chrnically ill patients received palliative care in their hmes r a cmmunity setting. -AIDS patients and children facing a terminal illness have access t palliative care beds designated t them. Majrity f deaths ccurred at hme r in the cmmunity -60% f the patients wh received hme care supprt services died at hme. -Hme care supprt teams treat 50% f the ppulatin estimated t be in need fr palliative each year. Significant reductin in severity f symptms -On a visual analgue scale, the level f pain reprted by 396 patients wh received palliative care was very lw (the mean basal pain mean was 2.9 and the median was 2.0). 118 -Mre than 90% f anther grup f patients reprted imprved level f pain after receiving palliative care and 83.2% f the patients in the same grup said that their dyspnea was managed effectively. -The effective cntrl f pain has been attributed t the increase in piid prescriptin t patients with late stage cancer. Patients highly satisfied with the care they received When asked, patients were highly satisfied with the care they received (the mean satisfactin scre fr 100 patients was 8.5/10 exceeding the mean satisfactin scre f 7.2/10 fr ther health care services in Catalnia.). Emtinal supprt, prviders cmmunicatin, and perceptin f safety were the aspects that received the highest scres. Remarkable reductin in use f acute resurces leading t huge savings -During the 20 years that fllwed the prject initiatin (1990-2010) a radical yet sustained reductin in the utilizatin pattern f acute services resurces was bserved. 119 120 (See Table 4) 118 Gmez-Batiste X, et al. Effectiveness f palliative care services in symptm cntrl f patients with advanced terminal cancer: a Spanish, multi-centre, prspective, quasi-experimental, pre-pst study. J Pain Symptm Manage 2010; 40:652-660. 119 Gmez-Batiste X, et al. Resurce cnsumptin and csts f palliative care services in Spain: a multi-centre prspective study. J Pain Symptm Manage 2006; 31:522-532. 120 Paz-Ruiz S, et al. The csts and savings f a reginal public palliative care prgram: the Catalan experience at 18 years. J Pain Symptm Manage 2009; 38:87-96. 49 P a g e

-This resulted in substantial cst savings fr the health system: a net saving f 8 millin Eurs/year in 2005 (at 15 years) and 16.7 millin Eurs/year in 2010 (at 20 years). Table 4 Catalnia WHO Prject- Achieved utcmes 2001-2010 1989 2001 2005 2010 Needs and Cverage Patients needed palliative care (n) (~ 20,000 31,000) Patients received care (n) 9,000 21,400 23,100 Service Cverage - Gegraphic area cver (%) 95% >95% 100% Service Cverage Cancer (%) 67% 79% 73% Service Cverage Nn-cancer (%) NA 25 57% 31-58% Resurce Utilizatin 121 Hspital admissins 63% 16% Emergency department use 52% 16% Mean length f stay in hspital (days) 12.0 8.0 Csts and Savings Ttal cst f palliative services (millins) 40.3 52.6 Ttal savings (millins) 48.0 69.3 Net savings (millins) 3.0 8.0 16.7 Net savings per patient received palliative care 690.0 Cnclusin The Catalnia WHO Public Health Palliative Care Prject demnstrated a systematic and cmprehensive apprach t establishing/integrating palliative care services int a health system. Mre imprtantly, the Prject prvided clear evidence fr the effectiveness and efficiency f a whle system mdel f the public health apprach t high quality seamless palliative care that is readily available at all care settings and prvided by cmpetent multiprfessinal teams. Catalnia s experience indicated that shifting the use f acute resurces t palliative care beds fr treating advanced disease inpatients in a publicly funded and freely accessible health system imprves the quality f care at end-f-life, lessens patients suffering, and generates substantial cst savings fr the health system. Figure 10 Catalnia WHO Public Health Palliative Care Prject: Results at 10, 15, and 20 Years 121 Serra-Prat M., Gall P., Picaza JM. Palliative care: a cst-saving alternative evidence frm Catalnia. Palliat Med 2000; 15:271 278. 50 P a g e

The Catalnia WHO Demnstratin Prject fr Public Health Palliative Care Implementatin: Results at 10, 15 and 20 Years. 1989 1990 2001 2005 2010 Initiatin 21,400 patients received PC Cst: 40.3 millin/year 23,100 patients received PC Cst: 52.7 millin/year Net saving: 8.0 millin/year Net saving: 16.7 millin/year Only 2 PC Services Planning Implementatin Implementtain PC fully integrated int Health system at all levels 237 PC Services Strategic Plan Assessment f ppulatin needs Define criteria f access t specialist PC Develp a mdel f care that uses a systematic apprach t assess and address the multidimensinal needs f patients and their families Change legislatins/plicies gverning prvisin f services t ensure: high quality, culturally sensitive, cnsistent and equitable services t all thse in need Revise legislatins/plicies gverning delivery f piid analgesics Develp a palliative care funding mdel Train all health care prfessinals in basic PC cmpetencies Integratin f basic PC int cnventinal health care services Make specialist PC services available thrughut the health care system Develp prfessinal standards Develp mnitring & evaluatin strategy. Prmte and supprt research Results Gegraphic Cverage: 95% PC services are cmpletely free f charge at the pint f care PC services extended t advanced geriatric and chrnically ill patients. Increase in number f Hme care supprt teams in all settings* Imprvement in pain management (On a visual analgue Scale: Mean basal pain: 2.9 Median: 2.0 fr 396 patients) Health care prfessinals highly satisfied with training they received (Mean scre is 8.4/10) A Palliative Research Grup was set up Fewer hspital admissins, ER visits and shrter length f stay Results Services- Accessibility, Uptake, Quality Gegraphic Cverage: > 95% 79% f cancer patients received PC. 25 57% f peple dying frm nn-cancer cnditins received PC. % f deaths at hme increased 25% increase in piid cnsumptin fr management f pain in cancer patients Patients Highly satisfied with received care (Mean scre is 8.5/10) Satisfactin is higher with emtinal supprt and cmmunicatin with prviders Significant reductin in severity f symptms: pain, weakness, insmnia, and anxiety Resurce Utilizatin: Fewer hspital admissins and ER visits Shrter length f stay Results Services- Accessibility, Uptake, Quality Gegraphic Cverage: 100% 73.3% f cancer patients received PC. 31% 58% f peple dying frm nncancer cnditins received PC. All effective drugs needed fr PC are made available and accessible and are funded, fr the mst part, by the NHS. Patients 91% had a multidimensinal assessment 91.8% reprted imprved level f pain 83.2% their dyspnea was managed effectively. Primary Care Prfessinals 70.5% f primary care prfessinals received training in PC Research and Training Unit established Surveillance Unit established t mnitr needs and demands Resurce Utilizatin: Fewer hspital admissins and ER visits Shrter length f stay *Palliative Care (PC) Supprt Team includes: Physicians, nurses and allied health prfessinals in all settings: hspitals, lng-term care centres and the cmmunity. 51 P a g e