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Lecture 2: Basics of palliative care: model of needs and model of care

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Title: Lecture 2: Basics of palliative care: model of needs and model of care


1
Lecture 2 Basics of palliative care model of
needs and model of care
2
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..

3
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?

4
The clinical / individual perspectiveWhat is
your current situation?
5
Young people with advance disease.
Old people with chronic and advance disease.
6
McNamara, 2006Minimal 50, Mid-range 55.5 ,
High range 89.4
7
Death trajectories. Lunney JR, et al. Profiles of
older Medicare decedents. J Am Geriatr Soc
2002501108-1112.
8

2
Murray, S. A et al. BMJ 2008336958-959
9
3
Murray, S. A et al. BMJ 2008336958-959
10
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

11
The symptoms and the consequences
12
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 20008175-179.
13
Frequency and degree of control of 10 symptoms at
Morir de Càncer XGB et al, 1996
14
SYMPTOM HOSPICE NURSES SELECTING THE SYMPTOM ()
Agitation 45
Pain 40
Shortness of breath 34
Confusion 33
Pressure ulcers 27
Nausea 26
Fatigue 25
Constipation 24
Depression 22
Anxiety 21
Symptoms difficult to manage
From Johnson DC, Kassner CT, Houser J, Kutner JS.
Barriers to effective symptom management in
hospice. J Pain Symptom Manage 20052969-79.
15
How do you feel when you suffer?
16
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

17
The model of needs
18
Characteristics of needs
  • Multidimensional
  • Evolutive Crisis
  • Ethical dilemmas

19
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.
20
  1. ILLNESS MANAGEMENT

2. PHYSICAL
3. PSYCHOLOGICAL
8. LOSS, BEREAVEMENT
4. SOCIAL
PATIENT FAMILY
7. CAREAT THE END OF LIFE / DEATH MANEGEMENT
5.SPIRITUAL
6. PRACTICAL
21
  • 2. PHYSICAL
  • Pain 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)
  • 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)
  • 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
  • 8. LOSS, BEREAVEMENT
  • Loss
  • Pain (for example, chronic acute, anticipatory)
  • Bereavement planning
  • Mourning
  • 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)

PATIENT FAMILY Characteristics Demographic
(age, sex, race, contact information) Culture
(ethnic, language, nurture) Personal values,
beliefs, practices, strengths Development status,
education, alphabetization Disabilities
  • 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
  • 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

22
Patient / Family
Characteristics Demographic (age, sex, race,
contact information) Culture (ethnic, language,
nurture) Personal values, beliefs, practices,
strengths Development status, education,
alphabetization Disabilities
23
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)

24
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)

25
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

26
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)

27
5.Spiritual
  • Significance, value
  • Existential, transcendental
  • Values, beliefs, practices, affinities
  • Spiritual advisors, rituals
  • Symbols, icons

28
6. Practical
  • Everyday activities (personal care, home work)
  • Dependents, pets
  • Access to telephone, transport
  • Care

29
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

30
8. Loss, bereavement
  • Loss
  • Pain (for example, chronic acute, anticipatory)
  • Bereavement planning
  • Mourning

31
The model of interventionThe Square of Care
32
The process of care
Needs patients and families 1. Assessment 2. Sharing information, ethical decision-making, define aims 4. Plan of care 5. Care activities 7. Measure results, review, update
Disease management
Physical
Emotional
Spiritual
Ethical
Family
Social
Practical
End of Life
Grief and loss
The square of care (Modified from Ferris F,
XGB, Furst CJ, Connor S, JPSM, 2007)
33
Therapeutic Relationship Therapeutic Relationship Therapeutic Relationship Therapeutic Relationship Therapeutic Relationship Therapeutic Relationship Therapeutic Relationship Therapeutic Relationship


Time
Presentation Diagnosis Discharge /Death
The square of care (Ferris F, 2007)
34
  • 6. Confirm
  • Understanding
  • Satisfaction
  • Complexity
  • Stress
  • Concerns, other issues, questions
  • Ability to participate in the plan of care
  • 1. Evaluation
  • History of active and potential issues,
    opportunities for growth, expectations, needs,
    hopes, fears
  • Examination (assessment scales, physical
    examination, laboratory, radiology, procedures)
  • 5. Do Care
  • Care team composition, leadership,coordination,
    facilitation, education, training, support
  • Consultation
  • Setting of care
  • Essential services
  • Support network
  • Therapy delivery
  • Process
  • Storage, handling, disposal
  • Infection control
  • Errors
  • 4. Plan care
  • Setting of care
  • Process to negotiate and develop plan of care
    that addresses issues and opportunities, delivers
    chosen therapies
  • Includes plan for dependents, backup coverage,
    respite care, emergencies
  • Discharge planning
  • Bereavement care
  • 3. Decisions
  • Capacity
  • Goals for care
  • Issue prioritization
  • Therapeutic options
  • Treatment choices, consent
  • Withholding, withdrawing therapy,, hastened death
  • Surrogate decision-making
  • Advance directives
  • Conflict resolution
  • 2. Share information
  • Confidentiality limits
  • Desire and readiness for information
  • Process for sharing information
  • Translation
  • Reactions to information
  • Understanding
  • Desire for additional information

35
The basis of palliative care
36
How do you want to be care?
37
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

38
First of all
39
Main aims
Avoid the avoidable suffering
Wellbeing
Improve the Quality of Life
Building Capacity empowerment to adjust,
relief and support the unavoidable suffering
Promote comfort
Comprehensive Care
OMS 2002
40
Values
41
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
42
10 instruments for palliative care
  • Needs assessment.
  • Systematic therapeutic Plan.
  • Symptom control.
  • Emotional support.
  • Information and communication.
  • Clinical ethics as the method for decisions
  • Change in the micro organization the team work
  • Change in the organization of resources.
  • Evaluation and monitoring results quality and
    results.
  • Education, training, and research
  • And.. Advance Care Planning and Case management
  • and continuity of care

43
  • The Model of Care
  • The model of ICO

44
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

45
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 to patients and families
46
The Basic Competences
47
Basic Competences I
  • 1. Clinical skills
  • Assessment
  • Disease management
  • Symptom control
  • Use of drugs opioids and others

48
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
49
Basic Competences III
  • 3. Ethical decision- making

We have to preserve the patients authonomy,
promoting its welfare, always trying not to be
maleficent and in a context of an equal
distribution of resources for everyone
We have to.
50
Basic Competences III
  • 3. Advance Care Planning II

Professionals have to explore
A process and an attitude
51
Advance Care Planning
  • As an attitude
  • To recognize the other
  • Based on respect
  • Communication skills are necessary
  • Competence required
  • Confidence
  • Accessibility
  • As a process
  • Qualitative and progressive
  • Carefully
  • Integrative patient and family
  • Preventive
  • Registered
  • Follow-up

52
(No Transcript)
53
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

54
The nuclear needs
55
Nuclear needs of patients
To be considered as a person
  • Spiritual
  • Dignity
  • Hope
  • Respect

56
1. Spiritual needs
  • Sense of life/ Significance
  • Trascendence
  • Legacy
  • The others ( the love ones)

57
2. Dignity
The essence of You Matter
A Attitudes B Behaviors C Compassion D
Dialogue
58
3. Hope/ Hopefully
59
4. Respect
  • To be recognized as a person
  • To care as we would like to be cared.
  • We need to explore more..

60
(No Transcript)
61
Personal Behaviors and Values
62
Personal behaviors / and values
  • Empathy
  • Compassion
  • Commitment
  • Coherence
  • Honesty
  • Congruence
  • Others

63
Bmj Whats a good doctor? 2002
64
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

65
Death
Diagnosis
Bereavement
Specific cancer treatment
Supportive Care
Palliative care
Terminal care
Complexity vs prognosis Flexible, shared,
cooperative
Integrated model
66
In conclusion
67
(No Transcript)
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