1. Practice Support Program End of Life Learning Session 1 1

2. Acknowledgements Practice Support Program End of Life Committees: Dr. Cathy Clelland, Chair, Sheila Balson, Andy Basi, Sherry Bar, Dr. Doris Barwich, Dr. Clifford Chan-Yan, Louise Donald, Dr. Ian Courtice, Dr. Romayne Gallagher, Dr. Neil Hilliard, Pamela Hinada, Dr, Bruce Hobson, Dr. Marcus Hollander, Judy Huska, Pauline James, Dr. Marnie Jacobsen, Dr. Helena Kadlec, Liza Kallstrom, Dr. Douglas McGregor, Dr. Chris Rauscher, Pat Porterfield, Della Roberts, Christina Southey BC Hospice Palliative Care Association Learning Centre for Palliative Care: Hospice Palliative End-of- Life Primary Care Provider Education Project Fraser Health End of Life Care Program: Advance Care Planning Initiative Gold Standards Framework (http://www.goldstandardsframework.nhs.uk) 2

3. Why we are here (25 minutes, including patient/family voice and the module aim) 3

4. Session opening Introductions Housekeeping Personal experience with PSP End of Life 4

5. Module aims To improve the care of patients and families living with, suffering and dying from life-limiting and chronic illnesses by:  Identifying patients early who could benefit from a palliative approach to care  Enhancing GP & Specialist confidence and communication skills to enable Advance Care Planning (ACP) conversations.  Improving the experience of health care providers, patients and families: o Assessing patient and family needs from a palliative perspective. o Improving the experience of the patient, family, physician, MOA and healthcare providers in End of Life care. o Improve physician confidence related to End of Life care (e.g. care planning, forms). 5

6. Module aims To improve the care of patients and families living with, suffering and dying from life-limiting and chronic illnesses by:  Improving collaboration: o Identifying and referring appropriate patients to specialty palliative care and others for consultation and services. o Understanding provider needs, clarifying roles, tools and resources for practice support and collaboration. o Improving collaborative care planning, coordination and communication with patients/caregivers and physicians and other local health care and community providers. “Integration in Action” 6

7. PSP End of Life Care Algorithm 7

8. Case study: Mr. James Lee and his wife 8

9. Patient/Family’s voice video 9

10. End of Life Care: Expanding the scope (30 min. for this section plus Palliative approach to life-limiting disease section) 10

11. We are living longer. By 2025: 30% of the population >65. 33% increase in deaths over 2004. 2/3 will die with 2 or more chronic diseases after months or years in state of “vulnerable frailty”. Only 20% of us will die with a recognizable terminal (“palliative”) phase. Changing face of dying 11

12. Cause of deaths in Canada 12

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14. Function Death High Low Begin to use hospital more often, self-care more difficult Time ~ 2-5 years. Death usually seems “sudden” Modified from Lunney JR et al. JAMA 2003: 289: 2387. Terminal Phase End Stage Organ Failure: Approaching End of Life 14

15. “There will not be a distinct terminal phase. The week we die will start out like any other and some unpredictable calamity will occur. Amongst those of us with advanced heart failure, we will have had a 50-50 chance to live for six months on the day before we died” Joanne Lynn: Sick to Death and Not Going to Take it Anymore (2004) Ambiguous dying 15

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17. The Palliative Approach to life-limiting illness 17

18. Bereavement Care Illness trajectory Diagnosis of life-limiting illness Death Disease-modifying therapy Palliative Approach to Care Canadian Hospice Palliative Care Association: Model of care (2002) www.chpca.netwww.chpca.net 18

19. WHO definition of palliative care Palliative care is an approach that improves the quality of life of patients & their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification, impeccable assessment & treatment of pain and other problems, physical, psychosocial and spiritual. http://www.who.int/cancer/palliative/definition/en/ 19

20. The Palliative Approach: Living Well; Dying Well; and Bereavement 20

21. Palliative Approach Guided by person centered goals of care: 1.Pain and symptom management. 2.Psychosocial care for person. 3.Psychosocial care for family. 4.Spiritual care. 5.Disease management. 6.Preparing for and managing dying. 7.Bereavement. (Canadian Hospice Palliative Care Association: Norms, 2002) 21

22. Goodlin, S. J. J.A.C.C. 2009;54:386-396 Copyright ©2009 Patient journey in comprehensive heart failure care 22

23. Palliative Approach: Care through all the transitions 23 Time of Diagnosis Disease advancement Complication indicators Decompensation experiencing life limiting illness PPS ESAS BC Palliative benefits Decline and last days Dependency and symptoms increase Home care Death and bereavement Transition 1 Time McGregor and Porterfield 2009 Transition 5 Transition 4Transition 3 Transition 2 Early Chronic Disease Management Hope for cure survivor Seniors at risk

24. Best practice: Integrating the palliative approach Concurrent palliative and disease modifying care. Elimination of the “terrible choice”. Advance Care Planning and patient centered decision making. “Sick enough to die” rather than “certain to die”. Melanie Merriman PH.D. MBA NHPCO Conference Fall 2003 24

25. Best practice: Collaborative and interdisciplinary Palliative Care Australia 25

26. Outcomes: Palliative approach to care 26

27. Improved quality of life 27

28. Improved survival 28

29. Outcomes “ Good death” in the most appropriate location. Better pain and symptom management. Better long term outcomes for bereaved relatives. Improved experience of care. Better quality of care. Lower health care costs. Zhang et al. Arch Intern Med Vol 169(5) Mar 9 2009:480-488 29

30. BC Guidelines.ca 30

31. Table discussion (15 minutes) Introduce yourself and how you are involved with patients with chronic and life threatening illness. Identify what you hope to get out of the session today to improve the care of patients in relation to considering palliative/supportive care needs. 31

32. Table discussion (continued) Think about your self-audit OR a recent death of a non-cancer patient you were involved with` Were you satisfied with the experience?  If so, what made it work?  If NOT satisfied, why not? What were some of the gaps in clinical care? What could have been done differently? 32