Xavier Gómez-Batiste MD, PhD

1. OSI/WHOCC Introductory lecture 3 Palliative Care Public Health Programs with a WHO perspective Public Health Planning: Needs assessment, foundation measures, elements of Programs Xavier Gómez-Batiste MD, PhD Director, WHO Collaborating Center for Public Health Palliative Care Programs WHO Meeting

2. PUBLIC POLICY in PC Training Drugs Services Stjernsward, Ferris, Foley 2007

3. From the rising tides to tsunamis Cancer, geriatrics, aids, chronic evolutive diseases

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

5. PCPHP: objectives - Coverage - Equity - Accesibility - Quality - Satisfaction -(Reference WHO)

6. List of elements PC PH Programs: Topics Foundation measures Context analysis and Needs assessment Target population Clear aims: coverage, equity, quality Clear leadership and consensus with stakeholders Capacity building Defined model of care and intervention Measures: Implementation of specialist services, and improvement of conventional services, models of organization in demographic scenarios, standards of services Opioids Legislation Standards Financing systems, budget Education, training, and research Advocacy Quality evaluation and improvement Combine in an action plan: short, mid, long term, implementaion, reallocation, catalytic Systematic evaluation of results Indicators

7. Elements for self-assessment ICO DiR. CentreCol·laborador de l’OMS per Programes Públics de Cures Pal·liatives

8. Components of PCPHPs • Clear leadership and aims • Needs and Context Assessment • Clear model of care and intervention and definition of the target patients • General measures in conventional services (Specially Primary Care) • Specialist services in settings • Sectorised networks with coordination, continuing and emergency care • Education and training at all levels • Research Planning • Availability and accessibility of opioids and essential drugs • Legislation, standards, budget and models of funding and purchasing • Evaluation and improvement of quality • Evaluation of results, indicators • Action plans at short, mid and long term • Advocacy • Social implication: volunteers, social involvement in the cultural, social and ethical debates around the end of life

9. Principles of a PHPCP • Good care as a human right • Model of care and inervention: based on patients and families’ needs • Model of organisation: based on a competent interdisciplinary team, with clinical ethics, case management, and advance care planning • Based on population needs and adapted to demography and settings in the Health Care System • Community oriented • Coverage, equity, access and quality to every patient in need of it • Quality: effectiveness, efficiency, satisfaction, continuity, sustainability • Systematic evaluation of results, accountability, evidence • Social interaction • Added values: Compassion, interdisciplinarity

10. Foundation measures Previous measures: consensus, decission-makers, advocacy, identifying leaders Context analisys, Needs assessment , and Basal studies Formal plan designed and approved Clear Legislation and standards Opioid availability and accesibility Leadership at the DoH Capacity building Building reference teams Training oriented to capacity building and references of key services Identifying alliances, barriers and difficulties

11. Initial key processes Clear ideas Clear definition of clients and services Leadership “Catalythic”implementation or investment Training oriented to build references References / experiences Institutional support

12. Types of processes(always combined) “Catalythic”implementation or investment Implementation of new specific resources Adaptation of conventional resources (general measures) Reallocation of resources (reconversion)

13. Needs assessment Context analysis Quantitative Qualitative

14. Context analysis of Public Health Palliative Care Programs Global country profile (Population, ageing, life expectancy, GBP, development) Characteristics of the Health care system and care settings Quantitative needs assessment: Demographic and general characteristics: mortality and prevalence of chronic evolutive diseases, Basal surveys / studies Background: previous initiatives Mapping the existing services and resources Qualitative analysis Identification of resistances, barriers, and possible alliances

15. Context analysis Populational data Demographic: Population, life expectancy, ageing, Social: awareness, family rol, careers Economical: GDP Cultural, religious, Political The Health Care System: resources, funding, managerial, academic, research Leaders: professional, social, NGOs Quantitative Qualitative

16. Basal studies Select easy basal surveys or studies: • Relevant • Easy to measure • Easy to change • Easy to retrieve and monitorise Examples: • Pain prevalence and control • Use of essential opioids • Use of resources by termnal patients last month of life: emergencies, hospitals, • Focus group of professionals ICO DiR. CentreCol·laborador de l’OMS per Programes Públics de Cures Pal·liatives

17. The populational perspective:- Mortality- Prevalence (population)- Prevalence by settings

18. McNamara, 2006: Mortality

19. Mortality Prevalence Estimation Optimum Coverage Number of patients Cancer 1800 – 2250 (20-25% total mortality) 450 - 612 60% 1080 - 1575 No cancer 2700 – 3600 (30-40% total mortality) 1350 - 1800 30- 60%(*) De 810 – 1080 a 1620 – 2160 Cancer / no cancer 1 / 1.5-2 1/6 -1/8 --- Total 4500 – 5850 (50-65% of the total) 1800 - 2412   --- Directa: 1890 – 2655 Direct + Isolated: 2700 - 3735 Mortality, Prevalence, and Estimation of direct coverage per milion habitants in Spain (*) (*) Global mortality: 8950 persons / milion (**) 30% direct coverage and + 30% flexible interventions Source: Modifified from SECPAL, Informe Mº Sanidad, 2007

20. Every year, in a district of 200.000 h in Spain 1.800 persons will die 1.450 (75%) of them by chronic evolutive diseases (25% by cancer, 35-45% by other chronic diseases) There will be around 450 prevalent terminal patients living There will be 340 elderly with pluripathology and dependency There will be 300 elderly with dementia 1.500 elderly will live in Nursing homes or homes for the elderly

21. Catalonia: Mortality / prevalence Mortality Global : 60.000 Cancer : 16.000 Noncancer chronic: 29.000 Total chronic conditions: 45.000 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

22. 60-75% of population will die by a chronic evolutive disease

23. The clinical / individual perspective

24. NHS GPs Gold standards: prognostic indicators guidance

25. The model of care: any PC Program and/or Service must be based in an impecable model of care for patients and families

26. Pal Care organisational concepts Model of needs (individual and populations) Model of care and intervention Model of micro-organisation Model of organisation of services Comprehensive district networks National/regional perspectives

27. Conceptual Transitions From “Terminal disease” to “Advanced progressive illnesses” From “Prognosis of days weeks, < 6 months” to “Limited life prognosis” From “Progressive evolution” to Evolutive Crisis” From “Curative/paliative dychotomy” to “Shared synchronic care” Specific and palliative treatment can coexist From “rigid” to “flexible” intervention From “prognosis” to “complexity” as criteria of intervention From “response to crisis” to “advance care planning” From “palliative care services” to “palliative measures in all settings”

28. Implementing Palliative Care Specialist Services

29. Specific Resources / settings Hospices Acute Hospitals Mid term and long term, RHB, (Sociohealth Centers) Nursing homes Units Support teams Outp’s / Day care Community / home

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

31. Standards of specific resources 1 support team at home / 100.000 h 80-100 beds / milion habitants (10-20% acute, 40-60% mid term, 20-30% nursing homes) 20-25 full time doctors / milion habitants 1 team available in every hospital (units in teaching) Models of organisation adapted to demographic scenarios: metropolitans, intermediate, or small sectors < 100.000 Models in specific resources (cancer institutes, nursing homes, etc) XGB 2005, WHOCC, 2008

32. 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

33. Improving the quality of palliative care in all settings

34. Boundaries: other services Hospices Acute Hospitals Mid term and long term, RHB, Centers Nursing homes Conventional services Primary care Nursing Homes Primary care

35. General measures in conventional services Targets: Hospitals (oncology, internal medicine, geriatrics, emergencies), mid-term and long-term resources (nursing homes), primary care teams Training: policies, sessions, formal training, local references Change of organisation: teamwork, presence and support of the family Liaison of resources General measures cannot substitute the need of specialist palliative care services

36. Palliative Care Measures in General Services

37. Models of organisation in demographic and geographic scenarios

39. Demographic and setting scenarios Demographic Settings Primary/community care Nursing homes Longterm / intermediate Hospitals: district general, university Cancer Institutes • Rural • Urban • Rural-urban • Metropolitan Adapt the organisation to needs and contexts ICO DiR. CentreCol·laborador de l’OMS per Programes Públics de Cures Pal·liatives

40. District models

41. Training strategies Aims Short / mid / long term Targets Levels Methods Faculty Short term: oriented to create a nucleus of reference leaders and services

42. Different aims, methods, and targets for training at short or long term

43. Research strategies Aims Short / mid / long term Levels Methods Faculty Short-term: oriented to show results (to different targets), describe experience, generate evidence, and promote development

44. The legislation of palliative care includes The insertion of palliative care in the existing policies and financing models (Global or specific Health plans for Cancer, Geriatric, Aids, and other chronic conditions) The formal approval and recognition of the National Plan Basic legislation (Law, decree, or ministerial order) that could be generic Specific changes to assure opioid availability Other related legislations: advance directives and autonomy, rights of patients, ethical committees, support (funding or changes in labour legislation) for careers

45. Legislation and standards National Plan General or definition: law or decret (generic) Financing systems (specific for services) Opioid and essential medicines availability (the simplest, the best) Standards of services (description) “The simplest, the best”

46. Financing models Insert in the common financing model Combine: structure, activity, results, and quality Concept of “cathalitic” investment Reallocation Estimate expected savings “The simplest, the best”

47. Costs and savings

48. Basic Quantitative indicators for PCPHP Structure: • Formal program at the DoH (with all of the elements) • Clear leadership • Specialist resources: services, units, teams, beds • Nº Professionals • Legislation, opioids, standards, financing model, specific budget, indicators Process: • Care Activity, care processes • Nº patients (cancer / noncancer) reaching specialist services • Activities training / research / quality improvement • Measures in conventional services Outcomes / Results: • Direct coverage cancer and non cancer (% of total patients attended by specialist teams) • Quantitative indicators of services: Beds / milion, Services / population, geographical coverage, etc • Opioid Consumption (in morphine DDD) • Outputs: length stay, length intervention, place of death, etc • Clinical outcomes of pc services: Efectiveness, Satisfaction • Organizational outcomes : Efficiency / use / cost individual or global • Economical outcomes: global cost, global savings • Educational outcomes: Professionals trained, coverage of training levels • Research: clinical, organizational, evaluation of services • Publications: Number and impact factor

49. Elements for self-assessment ICO DiR. CentreCol·laborador de l’OMS per Programes Públics de Cures Pal·liatives

50. Advocacy Select targets: politicians, policymakers, managers, funders, academics, NGOs, public awareness, media, ….. Select messages (adapted to targets): effectiveness, efficiency, satisfaction, ethical issues, values, innovation, stories, ….. Select key results at short / mid / long times Prevent and treat: conflicts, threats, misunderstandings