palliative care 1 (novita kurnia sari).pdf
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Novita Kurnia Sari
Murray, S. A et al. BMJ 2008;336:958-959
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
resourcesSECPAL 2002, and XGB et al, 2009
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.
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
Characteristics of Needs
1.ILLNESS MANAGEMENT
2. PHYSICAL 3. PSYCHOLOGICAL
8. LOSS, BEREAVEMENT
7. CAREAT THE END OF LIFE /DEATH MANEGEMENT
4. SOCIAL
5.SPIRITUAL6. PRACTICAL
PATIENT & FAMILY
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
Time
Presentation 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
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
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)
6. Confirm
• Understanding
• Satisfaction
• Complexity
• Stress
• Concerns, other issues,
questions
• Ability to participate in the
plan of care