Xavier Gómez-Batiste MD, PhD

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


PUBLIC POLICY in PC

Training Drugs

ServicesStjernsward, Ferris, Foley 2007


From the rising tides to tsunamis

Cancer, geriatrics, aids, chronic evolutive

diseases


Background 80’s

• Eric Wilkes (Sheffield)• Vittorio Ventafridda (Milano)• Jan Stjernsward (WHO)• Kathy Foley (OSI, NY)

Palliative Care as a Public Health topic


- Coverage - Equity - Accesibility - Quality - Satisfaction -(Reference WHO)

PCPHP: objectives


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


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


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


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


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


Types of processes (always combined)

• “Catalythic” implementation or investment

• Implementation of new specific resources

• Adaptation of conventional resources (general measures)

• Reallocation of resources (reconversion)


Needs assessment

•Context analysis

•Quantitative•Qualitative


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


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


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


The populational perspective:

- Mortality- Prevalence (population)- Prevalence by settings


McNamara, 2006: Mortality


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


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


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


60-75% of

population will die by a chronic evolutive

disease


The clinical / individual

perspective


NHS GPs Gold standards: prognostic indicators guidance


The model of care: any PC Program and/or Service must be based in

an impecable model of care for patients and

families


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


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”


Implementing Palliative Care

Specialist Services


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


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


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


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


Improving the quality of

palliative care in all settings


Boundaries: other services

Conventional services

Primary care

Nursing Homes

Acute Hospitals

Nursing homesMid term and long term, RHB, Centers

Hospices

Primary care


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


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


Models of organisation in

demographic and geographic scenarios


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


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


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


Training strategies• Aims• Short / mid / long term• Targets• Levels• Methods• Faculty

Short term: oriented to create a nucleus of reference leaders and services


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


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


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


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”


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”


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


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


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


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


- 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


Quantitative analisys: JPSM, 2007

Institut Català d’OncologiaCare Resources 2009 (Total: 237)

PADES: 74

HSTs: 49

PCUs: 60Outps: 50

Other: 10


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%


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


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


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


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


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


Types of processes (always combined)

• “Catalythic” implementation or investment

• Implementation of new specific resources

• Adaptation of conventional resources (general measures)

• Reallocation of resources (reconversion)


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....


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”


Expected resultsEnormous improvement of the

quality of care:• Effectiveness• Efficiency: saving more than

the structural cost• Satisfaction: patients,

families, professionals


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”


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


Start low, and go slow, but do so!!!


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


Access to Pain relief and Palliative Care as a Human Right, Human Rights Wacht

Institut Català d’OncologiaPicasso: “Science and Charity”, Barcelona, 1917

Xavier Gómez-Batiste MD, PhD

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