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 resources
SECPAL 2002, and XGB et al, 2009

SYMPTOM Pain Easy fatigue

PATIENTS (%) 84 69 Edema

SYMPTOM

PATIENTS (%) 28 28

Taste change

Weakness
Anorexia Lack of energy Dry mouth Constipation

66
66 61 57 52

Hoarseness
Anxiety Vomiting Confusion Dizziness

24
24 23 21 19

Early satiety
Dyspnea Weight loss Sleep problems Depression Cough Nausea

51
50 50 49 41 38 36

Dyspepsia
Dysphagia Belching Bloating Wheezing Memory problems Headache

19
18 18 18 13 12 11

Most Common Symptoms of Patients with Advanced Cancer

SYMPTOM Agitation Pain Shortness of breath

HOSPICE NURSES SELECTING THE SYMPTOM (%) 45 40 34

Symptoms difficult to manage

Confusion
Pressure ulcers Nausea Fatigue

33
27 26 25

Constipation Depression
Anxiety

24 22
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.

Characteristics of Needs

1.ILLNESS MANAGEMENT

2. PHYSICAL

3. PSYCHOLOGICAL

8. LOSS, BEREAVEMENT PATIENT & FAMILY 7. CARE AT THE END OF LIFE / DEATH MANEGEMENT 4. SOCIAL

6. PRACTICAL

5.SPIRITUAL

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 families Disease management Physical 1. Assessment 2. Sharing information, ethical decision-making, define aims 4. Plan of care 5. Care activities 7. Measure results, review, update

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)

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 decisionmaking 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