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Building palliative care specialist services and

teams

OSI/WHOCC Introductory Lecture 4OSI/WHOCC Introductory Lecture 4

Xavier Gómez-Batiste MD, PhDDirector, WHO Collaborating Center

for Public Health Palliative Care Programs

Institut Català d’Oncologia

Building services: definitions

• Definitions: service, team, measures in conventional services, transitional measures

• Types of services• Indicators, Standards• Structure, process, results

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Definitions

• Structure: What we have• Process: What we do• Outcomes: What we achieve• Service: the organisation• Team: the professionals working

at the service

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Definitions: specialist palliative care services

“Palliative care specialist services are the specific resources devoted to care of advanced and terminal patients and their families. They include a well trained multidisciplonary team, who follows adequate care processes, and who are clearly identified by patients, families, and other services. Moreover, such specialists hold an administrative identity, specific budget, and leadership. They include support teams, units, outpatient clinics, days care centers, hopsices, and comprehensive networks” WHOCC 2009

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Transitional measures

Transitional measures are models of care delivering that use some resources (frequently individuals) such a specific nurse or consultant not fulfilling the criteria for a specialist service but devoted to advanced and terminal patients and families. TM can be the first step of further development of a specialist service. WHOCC 2009

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Specific Resources

• Specific nurses and/or consultants• “Monographic teams”: symptom control ,

psychosocial, bereavement• Support teams (basic, complete): in

hospitals, community, comprehensive systems

• Units: type, dimension, placement• Placement of beds: 10-20% acute, 40-60%

sociohealth (mid-term), 10-20% residential, 10-20% hospices

• Reference services: training and research• Comprehensive networks

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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

Specialist nurses or consultants

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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

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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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Building palliative care services

and teams

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Service’s description

Outputs

Patients and families needs(type, number, complexity)

Structure and Setting

Resources and dispositives

Activities

Processes

Outcomes:

Clinical, organizational economic, key

Context: needs, demands

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Description services: Description services: elementselements

Patients / families: Númber, typo,

complexity, dependency,

prognosis

Team: structure, training,

activities, process

Clínical: STAS, ESAS, emotional, experience,

satisfaction, ..

Outputs: length stay, mortality,

length intervention,

Other :impact, cost,

social, society, culture

Quality, research, training

Context:Demográphic, setting, etc.

Activities: Processes,

Types of activities

Institution, Internal and

external Clients

Results

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Frequent Process measures and Activities of Palliative Care

Services• Care of Patients (inpatient, outpatients, home, day care,

phone/online support)• Care of Families and Bereavement • Needs assessment (individuals, context) • Advance care planning• Continuing care and case management • Liaison of resources • Support of other teams• Team work: meetings, roles, support, relations, climate• Register and documentation• Evaluation of results • Internal training• External training• Research and publications• Quality assessment and improvement• Volunteers• Advocacy• Links to society

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Context

Quantitativeand qualitativeanalisys

Visions, scenarios, tendencies, strategies

Care, training, research qualityimprovementón

Qualitative:

Strong Points

Weaknesses

Threats

Opportunities

Persons , team, institution, clients, stakeholders,

Doctors, nurses, social workers, psychologists, administration, volonteers, chaplains, others

Mision, VisionValues, Principles, Objectives

Aims and actionsat short, mid, long

term

Patients & families

Elements of a Strategic Plan

Elements of a Strategic Plan

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Key issues

• Mission• Vision• Values• Objectives• Leadership

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Mission

“The reason to exist at the highest level” with an open, high and wide conception

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Vision

“The definition of the ideal development and excellence of the service at long term”, based in existing references

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Values

“The principles which preside our actions”

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Clinical Communication

Ethical /ACP

Continuity

Context: Team / Atmosphere / Values Organization oriented to patients and

families

Respect / Spiritual / Dignity / Hope

Values: committment, empathy, compassion, honesty, congruence, trust, confidence, ….

Basic Competencies

“You matter”“You matter”

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•Institutional commitment•Context analysis•Leadership•Defined type of service•Target patients and services•Mission, vision, principles and values•Model of care and intervention•Building the team•Training•Internal consensus: model of care, model organisation, types of activities•External consensus: target services, criteria of intervention•Starting activities•Indicators, standards, and quality improvement•Follow up and review

Foundation measures of Palliative Care Services (elements)

Foundation measures of Palliative Care Services (elements)

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•Context analysis•Strategic planning• Build leadership• Building the team•Training •Internal consensus •External consensus •Starting activities•Budgeting•Designing Evaluation

Aims and actions at short-term

Aims and actions at short-term

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•Demographic and general characteristics of the area and care settings•Background•Maping the existing services and resources •Quantitative needs assessment•Qualitative analysis •Basal surveys•Identification of resistances, barriers, and possible alliances

Context analysisContext analysis

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Objectives 1st year

1.Build up team

2.Strategic and action Plan

3.Start activities: clinical, training, research

4.Internal / external consensus

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Building leadership

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Components of leadership

Knowledge

Organization

Persons

Vision and strategy

StakeholdersAdvocacyQuality

Values: patient’s centered, commitment, respect, honesty, trust, compassion

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Personal competencies of team leaders (Goleman D)

Personal competencies

Self-management

Emotional self-awarenessSelf-assessmentSelf-confidenceSelf-control

Self-empowerment

AchievementInitiativeOptimismAdaptabilityFlexibilityTransparencyHonesty

Social competencies

Social awarenessEmpathyOrganizationalFocus on patients

Relationships management

Empowerment of team membersCollaboration and teamworkInspirationalInfluenceChange catalystBuilding bondsConflict management

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Building the team

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Team building

Objectives 1st year:

1.Select

2.Train

3.Consolidate

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Personal competencies of team members (Goleman D)

Personal competencies

Self-management

Emotional self-awarenessSelf-assessmentSelf-confidenceSelf-control

Self-empowerment

InitiativeOptimismAdaptabilityFlexibilityTransparency

Social competencies

Social awarenessEmpathyRespectFocus on patients

Relationships management

Collaboration and teamworkBuilding bondsConflict management

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The best (palliative care) professionals

• Competent• Committed• Conscious• Compassionate + • Mature• Respectful• Resilient

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Professional competencies

• Palliative care: clinical &organisation• Allied disciplines: Oncology, Internal

medicine, Primary/community Care, Geriatrics, Anesthesiology/Pain, etc

• “map” of allied competencies: ethics, quality, research, training,

• Knowledge of environment• The mixed, the best!!!

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Training: The first priority

Topics• Clinical• Organizational• LeadershipMethods:• Stages and visits to

reference services• Mentorship• Modelling in place

“Online and conventional training based in lectures do not guarantee the skills and real changes in practice”

“Online and conventional training based in lectures do not guarantee the skills and real changes in practice”

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Evolutive phases1. Forming2. Storming3. Norming4. Performing5. Evaluating and reviewing 6. Dissolving or reorientation

Tuckman’s model

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Internal consensus

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•Leadership•Conceptual: values •Strategic: mission, vision•Model of care and intervention•Therapeutical•Organisational: timetable, documentation, •Team: rols, functions, relations, conflict prevention•Quality and indicators

Areas of internal consensus at the 1st year

Areas of internal consensus at the 1st year

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1.ILLNESS MANAGEMENT

1.ILLNESS MANAGEMENT 2. PHYSICAL2. PHYSICAL 3.

PSYCHOLOGICAL

3. PSYCHOLOGICAL

8. LOSS, BEREAVEMENT

8. LOSS, BEREAVEMENT

7. CAREAT THE END OF LIFE / DEATH MANEGEMENT

7. CAREAT THE END OF LIFE / DEATH MANEGEMENT

4. SOCIAL4. SOCIAL

5.SPIRITUAL5.SPIRITUAL6. PRACTICAL6. PRACTICAL

PATIENT & FAMILY

PATIENT & FAMILY

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Needs patients and families

1. Careful Assessment

2. Sharing information and aims

4. Plan of care

5. Care activities

6. Follow up and results

Disease management

Physical

Psychological

Spiritual

Ethical

Family

Social

Practical

End of Life

Grief and loss

Model of care and intervention

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•Care of Patients (inpatient, outpatients, home, day care, phone / online support)•Care of Families and Bereavement •Needs assessment (individual, context) •Ethical decission-making and Advance care planning•Continuing care and case management •Liaison of resources •Support of other teams•Team work: meetings, rols, support, relations, climate•Register and doccumentation•Evaluation of results •Internal training•External training•Research and publications•Quality assessment and improvement•Volonteers•Advocacy•Links to society

Frequent Processes, measures and Activities of Palliative Care Services

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Patients & family Needs

Principles

Quantitative analysis

Qualitative: strengths and weaknesses

Areas of improvement

Objectives

Actions

Indicators

Disease

Physical

PsychologicalSpiritual

Ethical

Social

Family

Practical

Last daysBereavement and loss

Model of self assessment of Care Dimensions

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Therapeutic consensus

• Defining and norming the basic therapeutic principles.

• Based on experience and evidence• Agreement of team members on the

treatment of the prevalent conditions of patients and families

• Built up by investing time and efforts in the discussion of cases, and bringing together the experience of members

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WHOCC Basic Indicators of PCSs

Structure:

• Multidiscilinary team

• Advanced specialist training

• Documentation

• Unit / office / setting / access

• Policies

Process:

• Multidimensional evaluation of needs of patients and families

• Systematic elaborated multidisciplinar plan of care

• Systematic approach of process of care (square of care)

• Systematic monitoring and review of clinical outcomes and organisational outputs

• Team approach: meetings, plan, assessment, doccumentation

• Continuing care and accesibility

• Links with other services

• Documentation and tools complimented

• Activities training / quality improvement

• Bereavement process Adapted from SCBCP 1993 and SECPAL 2006

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Dimensions of organization

Principlesmodel care

Quantitative anallysis

Strong points

Weak points

Areas for improvement

Objectivespriorities

Actions short, mid, long

IndicatorsResponsables

Care patients(Dimensions)

Care families(Dimensions)

Team(dimensions)

Decission making

Evaluation and monitoring

Coordination/ liaison/accesibility/continuity

Training, research

Other

Square of evaluation and improvement: services

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Action plan 1st year: clinical

1. Select Clinical activities and number- Support team?- Outpatients clinic?- Unit?- Day care?- Home care? 2. Select target patients and services3. Define criteria (and limits) of admission

and intervention

Coverage never a priority first year

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Action plan 1st year: training

1. Internal training 1st priority

2. Target services3. Key topics4. Key protocols

Coverage never a priority first year

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Starting clinical activities

• Start gradually (inpatient care or home care, support of other teams, outpatients’ clinics, day care and others) based on feasibility and available resources.

• Respect time and spaces to the tasks of building the team. • Gradual approaches: to focus in few target services and

only inpatients. In home care services, select the most accessible area and primary care.

• It is also frequent to select target patients initially (mostly, cancer) and expand gradually into others.

• Frequent limitations in the early stages: Late intervention, Difficulty of offering 24hrs coverage, Absence of other resources (specialist beds, or home care services, or both)

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

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

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Action plan 1st year: research

1. Select parameters (*) of success:- Symptom control- Use of resources- Use of opioids- Satisfaction2. Improve description: - Prevalence, surveys, etc(*): easy to change, to measure and to

find

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External consensus

1.Institution / stakeholders

2.Target services (our clients!!)

• Criteria admission

• Criteria intervention

• Rol of the service in the followup and continuing care

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Figure 5: Criteria for interventionofspecialistservices

Needsanddemandsattheconventionalservice

Multidimensional Assessment: complexity

TherapeuticPlan andindicationofresources

Rol in thecare: - Shared / Exclusive - Case management– Advancecareplanning - Continuity- Emergency

+ Supportofthe referentteam

Back toconventional service ifstable

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3

Murray, S. A et al. BMJ 2008;336:958-959

Crisis prevention and intervention

Crisis prevention and intervention

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Dissociated/dichotomic model

Diagnosis Death

Bereavement

One way, late intervention, terminal care, lack of influence

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Diagnosis Death

Specific cancer treatmentSupportive Care

Palliative care

Terminal care

Bereavement

Complexity vs prognosis Flexible, shared, cooperative

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The earliest, the best!!!

The earliest, the best!!!

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Measure progress at short-term

• Select the easiest, simplest, fastest indicators and results

• Oriented to show results to different targets

• Describe experience, generate evidence, and promote development

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Structure Process Outcomes Multidiscipli

nary team Advanced

training and competencies

Leadership Office Documentati

on 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 other

services Bereavement

Efficacy Effectivene

ss Cost Efficiency Cost/

effectiveness

Satisfaction: patients, families, services

Social Ethical

Basic Indicators of PCServices

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Advocacy

• Select targets: managers, politicians, policymakers, 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

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Resistances and barriers

• Individual / personal• Corporative• Denial• Values• Interests• Misconceptions• Unrealistic expectations or

demands• Some are based in our own

attitudes and behaviours

Identify, prevent, treat

Identify, prevent, treat

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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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Expected results

Enormous improvement of the quality of care:

• Effectiveness• Efficiency: saving more than

the structural cost• Satisfaction: patients,

families, professionals