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Institut Català d’Oncologia
Palliative Care Public Health Programs with a WHO
perspective Public Health Planning: Needs assessment,
foundation measures, elements of Programs
Xavier Gómez-Batiste MD, PhDDirector, WHO Collaborating Center
for Public Health Palliative Care Programs
WHO Meeting
OSI/WHOCC Introductory lecture 3
Institut Català d’Oncologia
PUBLIC POLICY in PC
Training Drugs
ServicesStjernsward, Ferris, Foley 2007
Institut Català d’Oncologia
From the rising tides to tsunamis
Cancer, geriatrics, aids, chronic evolutive
diseases
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
Institut Català d’Oncologia
- Coverage - Equity - Accesibility - Quality - Satisfaction -(Reference WHO)
PCPHP: objectives
Institut Català d’Oncologia
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
Institut Català d’OncologiaICO DiR. Centre Col·laborador de l’OMS per Programes Públics de Cures Pal·liatives
Does the written Palliative Care Plan include? 0 1 2 3
Aims, principles, mission, and vision
Assessment of needs: cancer and no cancer
Goals and measurable short, medium and long-term objectives
Plan of action to meet the objectives based on evidence, affordability, coverage, and equityIntegration of activities to existing chronic disease and other related programmes (Cancer, Geriatrics, Chronic, Health Plan)
Opioid availability and accessibility (Decree, Order, or Law)
Standards of specialist services
Directory of palliative care services
Definition of the model of care and intervention
Definition of the model(s) of organisation (in settings or districts)
Standards of general services (primary care, other)
Financing model
Specific budget
Law, Decree, or Order
Education and training Plan
Priority research areas to support the implementation of the plan
Development of an information system for monitoring and evaluating the prioritiesClear process and outcome indicators for monitoring an evaluation
Budget / Costing of the action plan and resources needed for its implementation
Elements for self-assessment
Institut Català d’Oncologia
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
Institut Català d’Oncologia
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
Institut Català d’Oncologia
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
Institut Català d’Oncologia
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
Institut Català d’Oncologia
Types of processes (always combined)
• “Catalythic” implementation or investment
• Implementation of new specific resources
• Adaptation of conventional resources (general measures)
• Reallocation of resources (reconversion)
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Needs assessment
•Context analysis
•Quantitative•Qualitative
Institut Català d’Oncologia
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
Institut Català d’Oncologia
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
Institut Català d’Oncologia
Basal studies
Select easy basal surveys or studies:• Relevant• Easy to measure• Easy to change• Easy to retrieve and monitoriseExamples: • 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. Centre Col·laborador de l’OMS per Programes Públics de Cures Pal·liatives
Institut Català d’Oncologia
The populational perspective:
- Mortality- Prevalence (population)- Prevalence by settings
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McNamara, 2006: Mortality
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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
Institut Català d’Oncologia
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
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Catalonia: Mortality / prevalence
Mortality • Global : 60.000• Cancer : 16.000• Noncancer chronic: 29.000• Total chronic conditions: 45.000Prevalence 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
Institut Català d’Oncologia
60-75% of
population will die by a chronic evolutive
disease
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The clinical / individual
perspective
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NHS GPs Gold standards: prognostic indicators guidance
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The model of care: any PC Program and/or Service must be based in
an impecable model of care for patients and
families
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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
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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”
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Implementing Palliative Care
Specialist Services
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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
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
Institut Català d’Oncologia
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
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
Institut Català d’Oncologia
Improving the quality of
palliative care in all settings
Institut Català d’Oncologia
Boundaries: other services
Conventional services
Primary care
Nursing Homes
Acute Hospitals
Nursing homesMid term and long term, RHB, Centers
Hospices
Primary care
Institut Català d’Oncologia
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 resourcesGeneral measures cannot substitute the need of specialist palliative care services
Institut Català d’Oncologia
AIM PRIMARY CARE HOSPITAL CARE
Improving the capacity of professionals Basic and intermediate training in Palliative Care
Identification of patients in need (PIG from the Gold Standards Framework)
Registries
Identification of patients in needUse of GSFClinical charts with registries (symptom’s checklist, etc), Assessment
Tools, etc
Internal and external reference professionalsSpecific reference professionals (Doctors, nurses, others) with
advanced training and dedication to palliative care
Improving accesibility of patients and families
Promotion home care Phone support programsAccess to rapid consultationDirect access to palliative care beds InformationFree access of families to Hospital
Improving continuing care and emergency careAdvance care planning, continuing care, 24h phone access, Actitud
preventiva, Teléfonos 24h, tailored emergency care, Direct access to PC beds
Specific times and places for patients and families Specific times for advanced
patients and families
Specific outpatients times for advanced patients and families
Advanced terminal patients agrupated in units
Improving family careEducation and support for careersPrevention and treatment of complicated bereavement
Promotion of Team workTeam meetingsTeam support and prevention burnout
Promotion of privacy and dignity Individual bedrooms
Assessing and Improving the quality of carePolicies: pain, last days, etcEoL inserted in the quality assessment
Coordination and integrated care with Specialist Palliative Care Services
Criteria of intervention and shared care with PCSsNurses able to demand
Other
Palliative Care Measures in General Services
Institut Català d’Oncologia
Models of organisation in
demographic and geographic scenarios
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Sectorized Planning
Needs:Demography
urban, rural, mixed
Resources
Type
cancer, geriatrics, AIDS, other
Complexity
low/high
Mortality / Prevalence
low/high
Specialist Services
+ General
Measures in conventional services
Direct coverage for complex diseases
Good care for non-complex diseases
• Criteria intervention
• Continuing / emergency care
• Coordination
Institut Català d’Oncologia
Demographic and setting scenarios
Demographic
• Rural• Urban• Rural-urban• Metropolita
n
Settings
• Primary/community care
• Nursing homes• Longterm /
intermediate• Hospitals: district
general, university• Cancer Institutes
ICO DiR. Centre Col·laborador de l’OMS per Programes Públics de Cures Pal·liatives
Adapt the organisation to needs and contexts
Institut Català d’Oncologia
District modelsDemographi
c areaDemography
(citizens; N)Examples Main conventional
resourcesProposed model of
PC services
Metropolitan
500,000 Areas of Metropolitan Barcelona (4 Central, North, South
University reference + General Hospitals + SHCs
Reference PCS (PCU, OPC, HST and training and research) at the University Hospitals
2-3 SHCs with Units
Urban 200,000 3 urban areas: Girona, Tarragona, Lleida
University General Hospital + 1-3 SHCs
HST + OPC in Hospital + PCU in Hospital and/or SHC
Rural-Urban 80 – 150,000 16 Districts: Osona, Bages, Empordà
District General Hospital + SHC
1 HST, 1 HCST 1 PCU in Hospital
or SHCPreferably as
comprehensive system
Rural < 50,000 High Pyrenees Community Hospital + SHC
Comprehensive system with a HST/HCST mixed acting in all levelsNo PCU needed
Common in all districts
Primary Care Centers every 20,000 habitants + Nursing homes
1 HCST/district / 100,000 hab + 1 HST in every hospital
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Training strategies• Aims• Short / mid / long term• Targets• Levels• Methods• Faculty
Short term: oriented to create a nucleus of reference leaders and services
Institut Català d’Oncologia
1-2 years Long term > 5 years
AimBuild up core nucleus of reference services
Training coverage for all professionals
TargetsClinical and organisational leaders of reference services
All professionals at the appropiate level
MethodsStages, visits, mentorship, tutorship, modelling
Pregraduate, IntermediateSpecialty
Faculty National & international
Local leaders from reference services
Different aims, methods, and targets for training at short or long term
Institut Català d’Oncologia
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
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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
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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”
Institut Català d’Oncologia
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”
Institut Català d’Oncologia
Costs and savingsType of service Calculation Subtotal / type Estimated
savings; Euros
HCST 229,000 x 72 services
16,488,000 (31%) TOTAL SAVINGS: 3,000 / patient x 23,100 = 69,300,000 HST 279,000 x 49
services13,671,000 (26%)
PCU 96 x 209,000 stays
20,064,000 (38%)
OUTPAT 155 x 9,000 processes
1,395,000 (3%)
PST 190,000 x 5 services
950,000 (2%)
TOTAL TOTAL COSTS: 52,568,000/ year
NET SAVINGS: 16,732,000 / year
Institut Català d’Oncologia
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, indicatorsProcess:• Care Activity, care processes• Nº patients (cancer / noncancer) reaching specialist services• Activities training / research / quality improvement• Measures in conventional servicesOutcomes / 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
Institut Català d’OncologiaICO DiR. Centre Col·laborador de l’OMS per Programes Públics de Cures Pal·liatives
Does the written Palliative Care Plan include? 0 1 2 3
Aims, principles, mission, and vision
Assessment of needs: cancer and no cancer
Goals and measurable short, medium and long-term objectives
Plan of action to meet the objectives based on evidence, affordability, coverage, and equityIntegration of activities to existing chronic disease and other related programmes (Cancer, Geriatrics, Chronic, Health Plan)
Opioid availability and accessibility (Decree, Order, or Law)
Standards of specialist services
Directory of palliative care services
Definition of the model of care and intervention
Definition of the model(s) of organisation (in settings or districts)
Standards of general services (primary care, other)
Financing model
Specific budget
Law, Decree, or Order
Education and training Plan
Priority research areas to support the implementation of the plan
Development of an information system for monitoring and evaluating the prioritiesClear process and outcome indicators for monitoring an evaluation
Budget / Costing of the action plan and resources needed for its implementation
Elements for self-assessment
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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
Institut Català d’Oncologia
The Catalonia WHO Demonstration Project
on Palliative Care implementation: results
at 20 yearsCatalan Department of Health +
WHO Cancer Unit(1990-2010)
Gómez-Batiste X et al, In press
Institut Català d’Oncologia
- External evaluation of indicators (Suñol et al, 2008) - SWOT nominal group of health-care professionals (Gomez-Batiste et al, Med Pal, 2007)- Focal group of relatives (Brugulat et al, 2008) - Benchmark process (2008) (Gomez-Batiste et al, JPM, 2010)- Efficiency (Serra-Prat et al Pall Med 2002 & Gomez-Batiste et al J Pain Symptom Manage 2006)- Effectiveness (Gomez-Batiste et al, J Pain Symptom Manage 2010)- Satisfaction of patients and their relatives (Survey CatSalut, 2008)Evaluations of the Catalonia
WHO Demonstration Project: Methods
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Quantitative analisys: JPSM, 2007
Institut Català d’OncologiaCare Resources 2009 (Total: 237)
PADES: 74
HSTs: 49
PCUs: 60Outps: 50
Other: 10
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Specialist services Additional processes / year Other relevant outputs
CARE SERVICES
Home Care Support Teams
721 / 110,000 citizensProcesses: 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: 28Beds: 383Processes:
6,300
Total PCUs: 60Total 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: 27Beds: 319Processes:
3,150
Mean age: 82 Length of stay: 35 days Mortality: 85%
PCUs in Acute Bed Hospitals
PCUs: 5Processes:
1,000
Cancer 80% Mean age: 61 Length of stay: 11d Mortality: 55%
Hospital Support Teams
49 Processes: 10,700
Cancer / non-cancer: 60 / 40
Mean Age: 73 Length of stay: 10 days
Psychosocial Support Teams
6 Processes: 1,500 Cancer 80%
Outpatient Clinics 50 Processes: 9,000 Cancer / non-cancer: 60 /
40
TOTAL CARE SERVICES: 237 TOTAL 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%
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Structure Process Outcomes Multidisciplin
ary team Advanced
training and competencies
Office Documentatio
n Protocols/
policies Criteria for
intervention
Multidimensional evaluation of patients needs
Multidimensional Therapeutic Plans for patients
Identifying and supporting primary career
Advance care planning Register and
Monitorising needs, demands, expectations
Evaluation of results Case management and
Continuing care Coordination Bereavement
Effectiveness
Cost Efficiency Satisfaction
: patients, families, services
Basic Indicators of PCS
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Catalonia 2010• Coverage (geographic): 100%• Coverage cancer: 73%• Coverage non cancer: 40-56% (*)• Proportion cancer/noncancer :
50%• Nº Dispositives: 231• Beds/milion: 101.6• Full time doctors: 220 (30 /
milion)
(*) McNamara, 2006
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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
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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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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
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Types of processes (always combined)
• “Catalythic” implementation or investment
• Implementation of new specific resources
• Adaptation of conventional resources (general measures)
• Reallocation of resources (reconversion)
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Common Resistances
• We are already doing so...• There is no need of specific
services, we will do a lot of training....
• Palliative care services will be seen as places to die....
• This is good for England, USA, or Catalonia, but it will not work in....
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Evolutive tendencies• From hospice to palliative care to
end of life care • From service’s vision to
populational vision• From cancer to other patients,
early and flexible interventions• From opinion into experience and
into evidence• From “problems” to “opportunities
of improvement”
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Expected resultsEnormous improvement of the
quality of care:• Effectiveness• Efficiency: saving more than
the structural cost• Satisfaction: patients,
families, professionals
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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”
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Conclusions: 15 years
• PC must be inserted in the National Health Care System and adapted to settings and districts
• PC development is effective, efficient, and generates high satisfaction
• There are evolutive tendencies (noncancer, early intervention)
• The governamental committment accelerates the process
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Start low, and go slow, but do so!!!
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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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Access to Pain relief and Palliative Care as a Human Right, Human Rights Wacht
Institut Català d’OncologiaPicasso: “Science and Charity”, Barcelona, 1917