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