ico dir. the ‘qualy’ end of life care observatory - who collaborating centre for public health...

ICO DiR. The ‘Qualy’ End of Life Care Observatory - WHO Collaborating Centre for Public Health Palliative Care Programmes Institut Català d’Oncologia

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


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?


Old people with chronic and advance disease….

Young people with advance disease….


McNamara, 2006Minimal: 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.


0

10

20

30

40

50

60

70

80

90

DEB PES ANOR DOLOR XER SOMN CONS INS NAU TOS

FREC

CONTROL

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 breath

34

Confusion 33

Pressure ulcers 27

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.

Symptoms difficult to manage


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 needsFrom 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 MANAGEMENT

1.ILLNESS MANAGEMENT 2. PHYSICAL2. PHYSICAL 3. PSYCHOLOGICAL3. 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 & FAMILYPATIENT & FAMILY


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)

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 & 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)

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)

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

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

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

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

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

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)

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

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

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

PATIENT & FAMILYCharacteristicsDemographic (age, sex, race, contact information)Culture (ethnic, language, nurture)Personal values, beliefs, practices, strengthsDevelopment status, education, alphabetizationDisabilities

PATIENT & FAMILYCharacteristicsDemographic (age, sex, race, contact information)Culture (ethnic, language, nurture)Personal values, beliefs, practices, strengthsDevelopment status, education, alphabetizationDisabilities


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 interventionThe Square of Care


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)


Therapeutic Relationship

TimePresentation Diagnosis Discharge /

Death

“The square of care”

(Ferris F, 2007)


2. Share information• Confidentiality limits• Desire and

readiness for information

• Process for sharing information

• Translation• Reactions to

information• Understanding• Desire for additional

information

2. Share information• Confidentiality limits• Desire and

readiness for information

• Process for sharing information

• Translation• Reactions to

information• Understanding• Desire for additional

information

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

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

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

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

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

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

1. Evaluation• History of active and

potential issues, opportunities for growth, expectations, needs, hopes, fears

• Examination (assessment scales, physical examination, laboratory, radiology, procedures)

1. Evaluation• History of active and

potential issues, opportunities for growth, expectations, needs, hopes, fears

• Examination (assessment scales, physical examination, laboratory, radiology, procedures)

6. Confirm• Understanding• Satisfaction• Complexity• Stress• Concerns, other

issues, questions• Ability to participate in

the plan of care

6. Confirm• Understanding• Satisfaction• Complexity• Stress• Concerns, other

issues, questions• Ability to participate in

the plan of care


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


Main aims

Avoid the avoidable sufferingAvoid the avoidable suffering

Building Capacity : empowerment to adjust, relief and support the unavoidable suffering

Wellbeing

Promote comfort

Improve the Quality of Life

Comprehensive Care

OMS 2002


Values


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 care1. Needs assessment.2. Systematic therapeutic Plan.3. Symptom control.4. Emotional support.5. Information and communication.6. Clinical ethics as the method for decisions7. Change in the micro organization: the team work8. 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


• 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

Characteristics of the model


Clinical Communication Ethical /ACP Continuity

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

Respect / Spiritual / Dignity / Hope

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

Basic Competences

“You matter”“You matter”


The Basic Competences


Basic Competences I

1. Clinical skills:

•Assessment •Disease management •Symptom control•Use of drugs: opioids and others


Basic Competences II2. 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


3. Ethical decision- making

Basic Competences III

We have to preserve the patient’s 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….


Basic Competences III3. Advance Care Planning II

A process and an attitude…

Professionals have to explore


Advance Care Planning

As a process:• Qualitative and

progressive• Carefully• Integrative: patient

and family• Preventive• Registered• Follow-up

As an attitude: • To recognize “the

other”• Based on respect• Communication skills

are necessary• Competence required• Confidence• Accessibility


Basic Competences IV4. 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

1. Spiritual

2. Dignity

3. Hope

4. Respect

“To be considered as a person”


1. Spiritual needs

• Sense of life/ Significance • Trascendence• Legacy• The others ( the love one’s)


2. Dignity

The essence of “You Matter”

A: AttitudesB: BehaviorsC: CompassionD: Dialogue


3. Hope/ Hopefully


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


Integrated model

Diagnosis Death

Specific cancer treatment

Supportive Care

Palliative care

Terminal care

Bereavement

Complexity vs prognosis Flexible, shared, cooperative


In conclusion……

ico dir. the ‘qualy’ end of life care observatory - who collaborating centre for public health...

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