Day 1 - Lecture 2 - Basics of PC & Model Needs English

Lecture 2: Basics of
palliative care: model of

needs and model of care
ICO DiR. The ‘Qualy’ End of Life Care Observatory - WHO Collaborating Centre for
Public Health Palliative Care Programmes
Institut Català d’Oncologia
Agenda
• We need answers…
• Clinical / individual perspective
• The symptoms and the consequences
• The Model of Needs
• Model of Intervention: SQUARE OF CARE
• Basis of Palliative Care
• Model of care : The Model of ICO
• Basic Competences
• Nuclear Needs
• Personal Behaviors and Values
• Model of Micro-organization
• In conclusion…..
We need answers…
• How do you feel when are you suffering?
• How do you want to be care?
• What is a good professional of palliative care?
The clinical / individual
perspective
What is your current situation?
Young people with advance disease….
Old people with chronic and

advance disease….
McNamara, 2006
Minimal: 50%, Mid-range: 55.5 %, High range: 89.4%
Death trajectories. Lunney JR, et al. Profiles of older Medicare
decedents. J Am Geriatr Soc 2002;50:1108-1112 .

2
Murray, S. A et al. BMJ 2008;336:958-959
3
Murray, S. A et al. BMJ 2008;336:958-959

Characteristics of terminal situation
• Disease or diseases: Advanced, progressive,
incurable
• Treatment: reduced chance response to specific
• Limited prognosis
• Symptoms: multiple, multifactorial changing,
severe, different by diseases
• Emotional impact on patient, family, and teams
• Frequent crisis of needs
• Frequent ethical dilemmas
• Frequent need and demand of resources
SECPAL 2002, and XGB et al, 2009
The symptoms and the
consequences
SYMPTOM PATIENTS (%) SYMPTOM PATIENTS (%)
Pain 84 Edema 28
Easy fatigue 69 Taste change 28
Weakness 66 Hoarseness 24
Anorexia 66 Anxiety 24
Lack of energy 61 Vomiting 23
Dry mouth 57 Confusion 21
Constipation 52 Dizziness 19
Early satiety 51 Dyspepsia 19
Dyspnea 50 Dysphagia 18
Weight loss 50 Belching 18
Sleep problems 49 Bloating 18
Depression 41 Wheezing 13
Cough 38 Memory problems 12
Nausea 36 Headache 11
Most Common Symptoms of Patients with Advanced Cancer
Walsh D, Donnelly S, Rybicki L. Support Care Cancer 2000;8:175-179.

FREC
90
CONTROL
80
70
60
50
40
30
20
10
0
DEB PES ANOR DOLOR XER SOM N CONS INS NAU TOS
Frequency and degree of control of 10 symptoms at “Morir de Càncer” XGB et al, 1996
SYMPTOM HOSPICE NURSES SELECTING
THE SYMPTOM (%)
Agitation 45
Pain 40
Shortness of 34
breath
Confusion 33
Symptoms
Pressure ulcers 27
difficult to
manage Nausea 26
Fatigue 25
Constipation 24
Depression 22
Anxiety 21
From Johnson DC, Kassner CT, Houser J, Kutner JS. Barriers to effective symptom management in
hospice. J Pain Symptom Manage 2005;29:69-79.
How do you feel when you
suffer?
Consequences of terminal situation
Suffering, difficult experience, impact,
isolation, multiple crisis
• High need and high demand of care

and services
• Frequent emergencies and
admissions
• Frequent ethical decisions
The model of needs
Characteristics of needs
 Multidimensional
 Evolutive Crisis
 Ethical dilemmas
Model of needs
From Saunders to Ferris….
Frank D. Ferris, MD is the Director, International Programs, San Diego

Hospice & Palliative Care, a teaching affiliate of the University of
California, San Diego, School of Medicine.
1.ILLNESS
2. PHYSICAL 3. PSYCHOLOGICAL
MANAGEMENT
8. LOSS,
BEREAVEMENT
PATIENT & FAMILY 4. SOCIAL
7. CARE
AT THE END OF LIFE /
DEATH
MANEGEMENT
6. PRACTICAL 5.SPIRITUAL
1. ILLNESS MANAGEMENT 2. PHYSICAL 3. PSYCHOLOGICAL
•Pain & other symptoms •Personality, strengths, behavior,
•Primary diagnosis, prognosis, tests •Conscience level, cognition motivation
•Secondary diagnosis (for example, •Function, safety, materials: •Depression, anxiety
dementia, psychiatric diagnosis, use of •Motor (mobility, shallowness, •Emotions (anger, distress, hope,
drugs, trauma) excretion) loneliness)
•Co-morbid (delirium, attacks, organs •Senses (hearing, sight, smell, taste, •Fears (abandonment, burdens, death)
failure) touch) •Control, dignity, independence
•Adverse episodes (collateral effects, •Physiologic (breathing, circulation) •Conflict, guilt, stress, assuming answers
toxicity) •Sexual •Self-image, self-esteem
•Fluids, nutrition, wounds
•Habits (alcohol, smoking)
8. LOSS, BEREAVEMENT 4. SOCIAL

•Loss •Values, cultural, beliefs, practices
•Pain (for example, chronic acute, PATIENT & FAMILY •Relations, roles with the family, friends,
anticipatory) Characteristics community
•Bereavement planning Demographic (age, sex, race, •Isolation, abandonment, reconciliation
•Mourning contact information) •Safe, comforting environment
Culture (ethnic, language, nurture) •Privacy, intimacy
Personal values, beliefs, practices, •Routines, rituals, leisure, vocations
7. CARE AT THE END OF LIFE/DEATH strengths •Financial resources, expenses
MANAGEMENT Development status, education, •Legal (powers of attorney for
•End of life (businesses ending, alphabetization businesses, health attention, advanced
relationships closing, to say goodbye) Disabilities directives, last desire/testament
•Delivery of gifts (objects, money, beneficiaries)
organs, thoughts)
•Creation of legacy
6. PRACTICAL 5.SPIRITUAL
•Preparation for the awaited death
•Everyday activities (personal care, •Significance, value
•Anticipation changes in agony
home work) •Existential, transcendental
•Rituals
•Dependents, pets •Values, beliefs, practices, affinities
•Certification
•Access to telephone, transport •Spiritual advisors, rituals
•Care of agony
•Care •Symbols, icons
•Funerals
Patient / Family
Characteristics
Demographic (age, sex, race, contact information)
Culture (ethnic, language, nurture)
Personal values, beliefs, practices, strengths
Development status, education, alphabetization
Disabilities
1. Illness management
• Primary diagnosis, prognosis, tests

• Secondary diagnosis (for example, dementia, psychiatric
diagnosis, use of drugs, trauma)
• Co-morbid (delirium, attacks, organs failure)
• Adverse episodes (collateral effects, toxicity)
2. Physical
• Pain and other symptoms
• Conscience level, cognition
• Function, safety, materials:
• Motor (mobility, shallowness, excretion)
• Senses (hearing, sight, smell, taste, touch)
• Physiologic (breathing, circulation)
• Sexual
• Fluids, nutrition, wounds
• Habits (alcohol, smoking)
3. Psychological
• Personality, strengths, behavior, motivation

• Depression, anxiety
• Emotions (anger, distress, hope, loneliness)
• Fears (abandonment, burdens, death)
• Control, dignity, independence
• Conflict, guilt, stress, assuming answers
• Self-image, self-esteem
4. Social
• Values, cultural, beliefs, practices
• Relations, roles with the family, friends, community
• Isolation, abandonment, reconciliation
• Safe, comforting environment
• Privacy, intimacy
• Routines, rituals, leisure, vocations
• Financial resources, expenses
• Legal (powers of attorney for businesses, health
attention, advanced directives, last desire/testament
beneficiaries)
5.Spiritual
• Significance, value
• Existential, transcendental
• Values, beliefs, practices, affinities
• Spiritual advisors, rituals
• Symbols, icons
6. Practical
• Everyday activities (personal care, home work)

• Dependents, pets
• Access to telephone, transport
• Care
7. Care at the end of life/ death
management
• End of life (businesses ending, relationships closing, to
say goodbye)
• Delivery of gifts (objects, money, organs, thoughts)
• Creation of legacy
• Preparation for the awaited death
• Anticipation changes in agony
• Rituals
• Certification
• Care of agony
• Funerals
8. Loss, bereavement
• Loss
• Pain (for example, chronic acute, anticipatory)
• Bereavement planning
• Mourning
The model of intervention
The Square of Care
The process of care
Needs patients and 1. Assessment 2. Sharing information, 4. Plan of care 5. Care 7. Measure
families ethical decision-making, activities results, review,
define aims update
Disease management
Physical
Emotional
Spiritual
Ethical
Family
Social
Practical
End of Life
Grief and loss
“The square of Public
care” (Modified from Ferris F, XGB, Furst CJ, Connor
Health Palliative Care Programmes
S, JPSM,
Institut Català 2007)
d’Oncologia
Therapeutic Relationship
Time
Presentation Diagnosis Discharge /
Death
“The square of care”

(Ferris F, 2007)
6. Confirm
• Understanding 1. Evaluation
• Satisfaction • History of active and
• Complexity potential issues,
• Stress opportunities for growth,
• Concerns, other issues, expectations, needs, hopes,
questions fears
• Ability to participate in the • Examination (assessment
plan of care scales, physical examination,
laboratory, radiology,
procedures)
5. Do Care
• Care team composition, 4. Plan care
3. Decisions
leadership,coordination, • Setting of care 2. Share information
• Capacity
facilitation, education, • Process to negotiate • Confidentiality limits
• Goals for care
training, support and develop plan of • Desire and readiness
• Issue prioritization
• Consultation care that addresses for information
• Therapeutic options
• Setting of care issues and
• Treatment choices, • Process for sharing
• Essential services opportunities, delivers
consent information
chosen therapies
• Support network • Translation
• Includes plan for • Withholding,
• Therapy delivery withdrawing therapy,, • Reactions to
dependents, backup
• Process hastened death information
coverage, respite care,
• Storage, handling, • Surrogate decision- • Understanding
emergencies
disposal making • Desire for additional
• Discharge planning
• Infection control • Advance directives information
• Bereavement care
• Errors • Conflict resolution
The basis of palliative care
How do you
want to be care?
Definition
• "An approach that improves the quality of life
of patients and their families facing problems
associated with life-threatening illnesses
through prevention and relief of suffering by
early identification and impeccable
assessment and treatment of pain and other
physical, psychological and spiritual problems”
WHO 2002
First of all
Family
Patient
You
matter
Main aims
Improve the Quality
of Life Avoid the avoidable Wellbeing
suffering
Building Capacity :
empowerment to adjust,
Promote comfort relief and support the Comprehensive Care
unavoidable suffering
OMS 2002
Values
Respect
their
values
Active,
alive Integrity
conception
Patient
and
relatives
Trust Honesty
Principles
•We are focused on the patient and his/her
family
•We are Accessible
•We are Collaborative
•We provide high quality:
•We are Safe and Effective
•We are based on Evidence
•We have resources
Ferris and Gómez- Batiste

10 instruments for palliative care
1. Needs assessment.
2. Systematic therapeutic Plan.
3. Symptom control.
4. Emotional support.
5. Information and communication.
6. Clinical ethics as the method for decisions
7. Change in the micro organization: the team work
8. Change in the organization of resources.
9. Evaluation and monitoring results quality and results.
10. Education, training, and research
And….. Advance Care Planning and Case management

and continuity of care
The Model of Care
The model of ICO
Characteristics of the model
• Centered on the relation Patient-Professional
• “Style” and behaviors related to the individual

professional values, and skills
• Not only based on technical aspects
• Applicable by any professional, and in any context,

service and situations
• Pragmatic, feasible
“You matter”
Values: commitment, empathy,

compassion, honesty,
congruence, trust, confidence, ….
Respect / Spiritual / Dignity / Hope
Clinical Communication Ethical /ACP Continuity
Basic Competences
Context: Team / Atmosphere / Values
Organization oriented
Public Health Palliative Care Programmesto patients and families
The Basic Competences
Basic Competences I
1. Clinical skills:
•Assessment
•Disease management
•Symptom control
•Use of drugs: opioids and others
Basic Competences II
2. Communication skills.
• Therapeutic attitudes
• Basic Skills to communicate
• Assertively
• Counseling
• To recognize the emotional issues
• Validation
• Crisis management
• Emotional support
• Setting Modified from J Barbero, 2009
Basic Competences III
3. Ethical decision- making
Patient
without
Advance
Directives
Limit
Assisted
therapeutic
Suicide…
effort
Most We have to preserve the

frequent patient’s authonomy, promoting
dilemmas in
terminal ill
We have its welfare, always trying not to
Palliative to…. be maleficent and in a context of
Demands of
Euthanasia
Sedation /
Terminal
an equal distribution of resources
Sedation for everyone
Hidratation/
Nutrition
Basic Competences III
3. Advance Care Planning II
Professionals have to explore
Preferences/
Wishes
Objectives/
Expectatives
Values
Advance
Directives
A process and an attitude…
Advance Care Planning
As a process: As an attitude:
• Qualitative and • To recognize “the
progressive other”
• Carefully • Based on respect
• Integrative: patient • Communication skills
and family are necessary
• Preventive • Competence required
• Registered • Confidence
• Follow-up • Accessibility
Basic Competences IV
4. Continuity of care and Case Management
• Continuity: commitment to accessibility in any circumstance,

specially in response to crisis
• Reference: being advocate of patients’ trajectory
• Case management : planning and follow up of appropriate
resources and accessibility
• Interdisciplinary Coordination
• Share information
• Continued learning
• Care-givers’ support
• Care in the dying phase
The nuclear needs
Nuclear needs of patients
“To be considered as a person”
1. Spiritual
2. Dignity
3. Hope
4. Respect
1. Spiritual needs
• Sense of life/ Significance

• Trascendence
CONNECTION
• Legacy SENSE
• The others ( the love one’s)

TRASCENDENTAL
SPIRITUAL RELIEF
2. Dignity
The essence of “You Matter”
A: Attitudes
B: Behaviors
C: Compassion
D: Dialogue
3. Hope/ Hopefully
Redirecting
main goals
( Survival vs
Comfort)
Identifying Promoting
their own Adaptative
skills goals
Increasing
hope
Giving
Improving Emotional
autocontrol and Social
Support
4. Respect
To be recognized as a person
To care as we would like to be cared….
We need to explore more…..
Personal Behaviors and Values
Personal behaviors / and values
• Empathy
• Compassion
• Commitment
• Coherence
• Honesty
• Congruence
• Others
Bmj What’s a good doctor? 2002
Model of micro-organization
A systematic approach to
multidimensional needs practiced by a
competent interdisciplinary team with
ethical decision-making, case
management, and advance care
planning
Diagnosis Death
Bereavement
Specific cancer treatment
Supportive Care
Palliative care
Terminal care
Complexity vs prognosis Flexible, shared, cooperative
Integrated model
In conclusion……

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Lecture 2: Basics of

palliative care: model of

• How do you want to be care?

• What is a good professional of palliative care?

What is your current situation?

Old people with chronic and

decedents. J Am Geriatr Soc 2002;50:1108-1112 .

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

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

SECPAL 2002, and XGB et al, 2009

Easy fatigue 69 Taste change 28

Lack of energy 61 Vomiting 23

Dry mouth 57 Confusion 21

Early satiety 51 Dyspepsia 19

Weight loss 50 Belching 18

Sleep problems 49 Bloating 18

Cough 38 Memory problems 12

Most Common Symptoms of Patients with Advanced Cancer

Walsh D, Donnelly S, Rybicki L. Support Care Cancer 2000;8:175-179.

• High need and high demand of care

Frank D. Ferris, MD is the Director, International Programs, San Diego

8. LOSS, BEREAVEMENT 4. SOCIAL

• Primary diagnosis, prognosis, tests

• Personality, strengths, behavior, motivation

• Everyday activities (personal care, home work)

Grief and loss

“The square of care”

Ferris and Gómez- Batiste

And….. Advance Care Planning and Case management

• “Style” and behaviors related to the individual

• Not only based on technical aspects

• Applicable by any professional, and in any context,

Values: commitment, empathy,

Respect / Spiritual / Dignity / Hope

Clinical Communication Ethical /ACP Continuity

Most We have to preserve the

A process and an attitude…

• Continuity: commitment to accessibility in any circumstance,

• Sense of life/ Significance

• The others ( the love one’s)

The essence of “You Matter”

We need to explore more…..

Specific cancer treatment

Complexity vs prognosis Flexible, shared, cooperative

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