The Quest for Quality End of Life Care

1. The Quest for Quality End of Life Care Larry Librach MD,CCFP,FCFP Professor & Head, Division of Palliative Care, Dept. of Family Medicine, Sun Life Financial Chair & Director Joint Centre for Bioethics, University of Toronto

2. Thank you for your friendship and for your commitment to quality end of life care

3. We all die !

4. “In some respects, this century’s scientific and medical advances have made living easier and dying harder” “Approaching Death”-The Institute of Medicine 1999

5. How We Die There is considerable evidence that many people still die very “badly” in our health care systems

6. We have developed systems that provide quality care for birthing. Can we now do the same for quality care for the dying?

7. Temmy Latner Centre for Palliative Care

8. What Defines Quality End-of-Life Care? • Defining a “good death” • Health care policy • A framework for holistic, interprofessional care • Doing comprehensive assessment & negotiating goals of care • Multiple integrated locations for care • Education of health care providers • Evaluating outcomes

9. Defining a Good Death

10. Defining a Good DeathSinger PA et al Quality end-of-life care: Patients’ perspectives JAMA 1999;281:163-8 • 5 dimensions of a good death • Pain/symptom management • Avoiding prolongation of dying • Achieving a sense of control • Relieving burden on others • Strengthening relationships with loved ones

11. Defining a Good Death • Pain and symptom management • Preparation for death • Completion • Contributing to others • Affirmation of the whole person • Clear decision making Steinhauser et al In search of a good death: observations of patients, families, and providers Ann Intern Med 2000;132:825-832

12. What is a Good Death in Trinidad? • Can you define a good death in your cultures? • How has it changed? • How will it change?

13. Health Care Policy • Recognition of the need for quality end of life care by government and your health care system • Health care system priorities • Good birthing and good dying! • Cost effectiveness of palliative care • Beyond institutional care

14. HCPs’ Issues of Dying & Death • One of the major barriers to providing good end of life care is the HCP’s own attitudes towards dying & death • Need to recognize your own issues and fears • Cannot practice what you do not know • Being overconfident about what you do know

15. Medical Attitudes Towards Death • High death anxiety in physicians & nurses • Death is the “enemy” • Purpose of medicine is often seen as finding a cure for death and not for its original purpose to care and comfort • Physicians are key to the change • Physicians can be barriers to change

16. Insert Title here

17. Your Own Attitudes • Shaped by: • Family experiences & teaching • Clinical experiences good & bad • Clinician role models • Fear • Religious beliefs

18. A Framework For Holistic, Interprofessional Care • Defining palliative care • Not an easy task • Multiple definitions • WHO, Canada, NHPCO, EAPC • Perhaps more important to define principles of palliative care

19. Definition of Palliative Care • Hospice palliative care aims to relieve suffering and improve the quality of living and dying • Hospice palliative care strives to help patients and families: • address physical, psychological, social, spiritual and practical issues, and their associated expectations, needs, hopes and fears • prepare for and manage self-determined life closure and the dying process • cope with loss and grief

20. Definition of Palliative Care • Hospice palliative care is appropriate for any patient living with a progressive, life-threatening illness due to any diagnosis, with any prognosis, regardless of age, and at any time

21. When is “Palliative or End of Life Care”? • No specific dividing line • NOT when active disease oriented therapy is stopped • No evidence that dealing with issues hurts patients or families

22. The Old Model of Palliative Care “Magic” dividing line CURE PALLIATIVE

23. Integrating Palliative Care Patient-centred care Family-centred care D e a t h Disease-modifying Bereavement Palliative The Time of Struggle The Last Hours

24. Guiding Principles • Patient and family focused • High quality care • Safe and effective • Accessible • Adequately resourced • Collaborative • Knowledge-based • Advocacy • Research

25. Cornerstones of PEOLC Comprehensive assessment + Goals of care

26. Overall message • Comprehensive assessment defines the issues that cause patient suffering and guides the development of the care plan • The goals of care are a bridge of understanding between the patient, family & care providers

27. Objectives in Assessment • Describe conceptions of suffering • Use a framework to guide assessment • Use a validated screening tools • Carry out a detailed assessment of issues for patient and family

28. Goals of Care • What are the wishes of patients & families? • What are the issues for their care providers?

29. Objectives In Goals of Care • Discuss potential goals of care • Understand the different goals and how they interrelate and change • Be able to adjust care and communication according to culture

30. Why skills in assessmentand in negotiating goals of care are important • Patients expect relief of suffering • Key diagnostic tool • Coordinates team of health professionals • Can have therapeutic effects • Develops the care provider-patient relationship

31. 1. Illness / treatment summary 2. Physical 3. Psychological 4. Decision making 5. Communication 6. Social 7. Spiritual 8. Practical 9. Anticipatory planning for death 9 Dimensionsof Assessment

33. Potential Goals of Care • Cure of disease • Avoidance of premature death • Maintenance or improvement in function • Prolongation of life • Relief of suffering • Quality of life • Staying in control • A good death • Support for families and loved ones

34. We are trained to seek simplicity and certainty. We must hunger for complexity and embrace ambiguity. - Leonard Hirsch

35. Location of Care • Acute care, long-term care, palliative care/hospice units and home care • Integrated system best • Complicated by level of care required • Care at the end of life is often without crises or need for more intensive care • PCUs are only one part of the system • Risk of becoming warehouses for the dying if not integrated system

36. Education of Health Care Providers • Defining core competencies for all HCPs • Use of effective education techniques • Education alone is just one of the factors in system change • Education alone is ineffective in changing HCP behaviour • Primary care & specialist care in all HCPs

37. Core Competencies in PEOLC • Address & manage pain and symptoms • Address psychosocial & spiritual needs • Address end of life decision-making and planning • Communicate effectively • Collaborate as a member of an interdisciplinary team • Attend to suffering

38. Competencies in EOLC • For all HCPs • Skills for each depend on primary care focus, specific disease focus or specialization focus • At all levelsUG,PG, and CPD • Integrated into curricula • Part of new focus on professionalism • Use of effective teaching techniques

39. Summary • As HCPs we need to provide excellent end of life care • The challenge for all of you is to meet the needs of dying patients and their families, relieve unnecessary suffering and deal with dying patients so that a “good death” is possible

41. Teamwork

42. Leadership

43. Dr. Larry Librach Temmy Latner Centre for Palliative Care