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 2002;50:1108-1112.

8. 2 Murray, S. A et al. BMJ 2008;336:958-959

9. 3 Murray, S. A et al. BMJ 2008;336:958-959

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. Most Common Symptoms of Patients with Advanced Cancer Walsh D, Donnelly S, Rybicki L. Support Care Cancer 2000;8:175-179.

13. Frequency and degree of control of 10 symptoms at “Morir de Càncer” XGB et al, 1996

14. Symptoms difficult to manage From Johnson DC, Kassner CT, Houser J, Kutner JS. Barriers to effective symptom management in hospice. J Pain Symptom Manage 2005;29:69-79.

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. ILLNESS MANAGEMENT 2. PHYSICAL 3. PSYCHOLOGICAL 8. LOSS, BEREAVEMENT 4. SOCIAL PATIENT & FAMILY 7. CAREAT THE END OF LIFE / DEATH MANEGEMENT 6. PRACTICAL 5.SPIRITUAL

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 • 6. PRACTICAL • Everyday activities (personal care, home work) • Dependents, pets • Access to telephone, transport • Care • 5.SPIRITUAL • Significance, value • Existential, transcendental • Values, beliefs, practices, affinities • Spiritual advisors, rituals • Symbols, icons

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 “The square of care” (Modified from Ferris F, XGB, Furst CJ, Connor S, JPSM, 2007)

33. “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 Improve the Quality of Life Avoid the avoidable suffering Wellbeing 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 themodel • 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 Continuity Communication Ethical /ACP 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 patient’s authonomy, promoting its welfare, always trying not to be maleficent and in a context of an equal distribution of resources for everyone Wehaveto….

50. Basic Competences III 3. Advance Care Planning II Professionals have to explore A process and an attitude…