Building palliative care specialist services and teams OSI/WHOCC Introductory Lecture 4 Building palliative care specialist services and teams Xavier Gómez-Batiste MD, PhD Director, WHO Collaborating Center for Public Health Palliative Care Programs

Building services: definitions Definitions: service, team, measures in conventional services, transitional measures Types of services Indicators, Standards Structure, process, results

Definitions Structure: What we have Process: What we do Outcomes: What we achieve Service: the organisation Team: the professionals working at the service

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

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

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

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

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 8

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”

Building palliative care services and teams

Service’s description Resources and dispositives Activities Processes Structure and Setting Patients and families needs (type, number, complexity) Outcomes: Clinical, organizational economic, key Context: needs, demands Outputs

Description services: elements Activities: Processes, Types of activities Context: Demográphic, setting, etc. Institution, Internal and external Clients Patients / families: Númber, typo, complexity, dependency, prognosis Team: structure, training, activities, process Quality, research, training Results Clínical: STAS, ESAS, emotional, experience, satisfaction, .. Outputs: length stay, mortality, length intervention, Other : impact, cost, social, society, culture 12

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

Elements of a Strategic Plan

Key issues Mission Vision Values Objectives Leadership

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

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

Values “The principles which preside our actions”

Respect / Spiritual / Dignity / Hope “You matter” Values: committment, empathy, compassion, honesty, congruence, trust, confidence, …. Respect / Spiritual / Dignity / Hope Clinical Communication Ethical /ACP Continuity Basic Competencies Context: Team / Atmosphere / Values Organization oriented to patients and families

Foundation measures of Palliative Care Services (elements) 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)

Aims and actions at short-term 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

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 analysis

Objectives 1st year Build up team Strategic and action Plan Start activities: clinical, training, research Internal / external consensus

Building leadership

Components of leadership

Personal competencies of team leaders (Goleman D) Self-management Emotional self-awareness Self-assessment Self-confidence Self-control Self-empowerment Achievement Initiative Optimism Adaptability Flexibility Transparency Honesty Social competencies Social awareness Empathy Organizational Focus on patients Relationships management Empowerment of team members Collaboration and teamwork Inspirational Influence Change catalyst Building bonds Conflict management

Building the team

Team building Objectives 1st year: Select Train Consolidate

Personal competencies of team members (Goleman D) Self-management Emotional self-awareness Self-assessment Self-confidence Self-control Self-empowerment Initiative Optimism Adaptability Flexibility Transparency Social competencies Social awareness Empathy Respect Focus on patients Relationships management Collaboration and teamwork Building bonds Conflict management

The best (palliative care) professionals Competent Committed Conscious Compassionate + Mature Respectful Resilient

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!!!

Training: The first priority Topics Clinical Organizational Leadership Methods: 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”

Evolutive phases 1. Forming 2. Storming 3. Norming 4. Performing 5. Evaluating and reviewing 6. Dissolving or reorientation Tuckman’s model

Internal consensus

Areas of internal consensus at the 1st year 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

7. CARE AT THE END OF LIFE / DEATH MANEGEMENT ILLNESS MANAGEMENT 2. PHYSICAL 3. PSYCHOLOGICAL 8. LOSS, BEREAVEMENT 4. SOCIAL PATIENT & FAMILY 7. CARE AT THE END OF LIFE / DEATH MANEGEMENT 6. PRACTICAL 5.SPIRITUAL 36

Model of care and intervention 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

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

Model of self assessment of Care Dimensions Patients & family Needs Principles Quantitative analysis Qualitative: strengths and weaknesses Areas of improvement Objectives Actions Indicators Disease Physical Psychological Spiritual Ethical Social Family Practical Last days Bereavement and loss Model of self assessment of Care Dimensions

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

WHOCC Basic Indicators of PCSs 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 Structure: Multidiscilinary team Advanced specialist training Documentation Unit / office / setting / access Policies Adapted from SCBCP 1993 and SECPAL 2006

Square of evaluation and improvement: services Dimensions of organization Principlesmodel care Quantitative anallysis Strong points Weak points Areas for improvement Objectives priorities Actions short, mid, long Indicators Responsables Care patients (Dimensions) Care families Team (dimensions) Decission making Evaluation and monitoring Coordination/ liaison/accesibility/continuity Training, research Other

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 services 3. Define criteria (and limits) of admission and intervention Coverage never a priority first year

Action plan 1st year: training Internal training 1st priority Target services Key topics Key protocols Coverage never a priority first year

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!!!!

Action plan 1st year: research Select parameters (*) of success: Symptom control Use of resources Use of opioids Satisfaction 2. Improve description: Prevalence, surveys, etc (*): easy to change, to measure and to find

External consensus Institution / stakeholders Target services (our clients!!) Criteria admission Criteria intervention Rol of the service in the followup and continuing care

Crisis prevention and intervention 3 Crisis prevention and intervention Murray, S. A et al. BMJ 2008;336:958-959

Dissociated/dichotomic model Death Diagnosis Bereavement One way, late intervention, terminal care, lack of influence Dissociated/dichotomic model

Integrated model Complexity vs prognosis Flexible, shared, cooperative Death Diagnosis Bereavement Specific cancer treatment Supportive Care Palliative care Terminal care Complexity vs prognosis Flexible, shared, cooperative Integrated model

The earliest, the best!!!

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

Basic Indicators of PCServices Structure Process Outcomes Multidisciplinary team Advanced training and competencies Leadership Office Documentation 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 Effectiveness Cost Efficiency Cost/effectiveness Satisfaction: patients, families, services Social Ethical Basic Indicators of PCServices

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

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

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”

Expected results Enormous improvement of the quality of care: Effectiveness Efficiency: saving more than the structural cost Satisfaction: patients, families, professionals