1. © 2006, The Pallium Project & Canadian Hospice Palliative Care Assn. Permission to use and reproduce in Canada is extended to those working with accredited health delivery organizations, educational institutions, professional associations/regulatory colleges and independently governed community agencies and hospice organizations. Transforming Our Understanding of Hospice Palliative Care

2. © 2006, The Pallium Project & Canadian Hospice Palliative Care Assn. Permission to use and reproduce in Canada is extended to those working with accredited health delivery organizations, educational institutions, professional associations/regulatory colleges and independently governed community agencies and hospice organizations. Acknowledgements This slideshow is a compilation of information/slides from a number of experts in hospice palliative care the Palliative Pain and Symptom Management Consultants: Cathy Joy, Janet Noble, Marie Palmer, Diane Reid, Chris Sherwood, and Marsha Wolowich Canadian Hospice Palliative Care Association and the Pallium Project

3. © 2006, The Pallium Project & Canadian Hospice Palliative Care Assn. Permission to use and reproduce in Canada is extended to those working with accredited health delivery organizations, educational institutions, professional associations/regulatory colleges and independently governed community agencies and hospice organizations. Agenda View Dying For Care – Towards Quality End-of-life Care (16 minutes) Review of CHPCA Model to Guide HPC Debrief about common myths, barriers and issues impeding quality care

4. © 2006, The Pallium Project & Canadian Hospice Palliative Care Assn. Permission to use and reproduce in Canada is extended to those working with accredited health delivery organizations, educational institutions, professional associations/regulatory colleges and independently governed community agencies and hospice organizations. View Dying For Care A compilation of insights with Hospice Palliative Care leaders conducted in late 2005 Reflects perspectives from a cross-section of professions and leaders from coast-to-coast. Provides insights into some of the things that might impede our abilities to work effectively with health care professionals in Hospice Palliative Care work.

5. Time Health Status Low High Death Prior to Antibiotics Sudden, Unexpected infections accidents adults lived into their 60s Sudden, Unexpected infections accidents adults lived into their 60s Slide compliments of Dr. Frank Ferris Oct 2005

6. Time Health Status Low High Slide compliments of Dr. Frank Ferris Oct 2005 Prolonged Dying predictable decline Prolonged Dying predictable decline DeclineDecline 1940s – 1980s DeathDeath

7. Disease, Aging in 2006 Sometimes cured Most often controlled  Life expectancy 10 - 20 yr. Canada ≈ 80 yr. USA ≈ 78 yr. India ≈ 64 Frank Ferris Oct 2005

8. Hospice Palliative Care in Non Cancer Illness Few of us will die acute deaths 90% of us will die with one or more chronic illnesses 29% of us will die of cancer 36% will die of heart or vascular disease By age 85, 47% of us will suffer from dementia 2004 Dr. Larry Librach

9. Exacerbations and Sudden Dying Function Low High Mostly Chronic Heart and Lung Failure Death Time J. Lynn; D. Anderson, 2003

10. Prolonged Dwindling Function Low High Frailty and Dementia Death Time J. Lynne, D. Anderson, 2003

11. Curative Palliative ActiveTerminal Traditional Model Earliest Model of Palliative Care developed Dame Cicely Saunders – 1960’s –1970’s Death

12. PresentationPresentationDeathDeath Therapies to modify disease Bereavement Care Therapies to relieve suffering and / or improve quality of life End-of-life Care Hospice Palliative Care Current Model Frank Ferris Oct 2005

13. Hospice Palliative care is not: A person/resident/patient A place A program C. Sherwood, PPSMC, 2004 Hospice Palliative Care:

14. Hospice Palliative care is: provided to a person/resident/patient provided in a place provided by health care practitioners, program, service etc. C. Sherwood, PPSMC, 2004

16. © 2006, The Pallium Project & Canadian Hospice Palliative Care Assn. Permission to use and reproduce in Canada is extended to those working with accredited health delivery organizations, educational institutions, professional associations/regulatory colleges and independently governed community agencies and hospice organizations. Hospice Palliative Care (HPC) A philosophy of care and range of active, supportive services provided across several settings of care (home, hospital, hospice, LTC/CC and settings of marginalization) to enhance the quality of living, dying and surviving. Appropriate for any patient and/or family living with, or at risk of developing, a life-threatening illness due to any diagnosis, with any prognosis, regardless of age, and at any time they have unmet expectations and/or needs, and are prepared to accept care.

18. © 2006, The Pallium Project & Canadian Hospice Palliative Care Assn. Permission to use and reproduce in Canada is extended to those working with accredited health delivery organizations, educational institutions, professional associations/regulatory colleges and independently governed community agencies and hospice organizations. Start with the end in mind… What are we trying to achieve? Canadians should be able to live well and die as free of pain and suffering as possible in the setting of their choice, surrounded by loved ones. Adapted from Quality End of Life Coalition of Canada Care

19. © 2006, The Pallium Project & Canadian Hospice Palliative Care Assn. Permission to use and reproduce in Canada is extended to those working with accredited health delivery organizations, educational institutions, professional associations/regulatory colleges and independently governed community agencies and hospice organizations. Rethinking Palliation Need to broaden our understanding of palliation. Hospice Palliative Care (HPC) as introduced in 2002 Model provides a pathway for improving care which addresses Chronic Progressive Illness. HPC as a philosophy/model of care is broader than the earlier palliative care services provision model. Each dying process/death event impacts at least 8 others directly – considerable hidden health risks/costs. Emerging opportunities to provide different supports at the community-level (e.g., practical/ advanced care planning; transportation; bereavement support).

20. © 2006, The Pallium Project & Canadian Hospice Palliative Care Assn. Permission to use and reproduce in Canada is extended to those working with accredited health delivery organizations, educational institutions, professional associations/regulatory colleges and independently governed community agencies and hospice organizations. A Growing Need Around 250,000 Canadians will die this year as many as 165,000 could use hospice palliative care services. Not just about cancer, but other major causes of expected death including: End-stage organ failure (e.g., heart, lung, renal) Neurological illness (e.g., Alzheimer’s, ALS, MS) Immunological illness (e.g., HIV/AIDS) Many people are living much longer with illnesses which will lead to an expected death, often with pain/suffering. At present less than 15% of Canadians have access to hospice palliative care services in Canada. Rural and remote Canada is generally doing much worse than most cities.

21. © 2006, The Pallium Project & Canadian Hospice Palliative Care Assn. Permission to use and reproduce in Canada is extended to those working with accredited health delivery organizations, educational institutions, professional associations/regulatory colleges and independently governed community agencies and hospice organizations. The Current Reality Canadians are living longer, Baby Boomers are aging – if we aren’t meeting the needs today what will we do in 20 years? 33% more deaths by 2020 Most Canadians say they would like to die at home or stay at home as long as possible yet 75% die in acute care beds or long term care homes(2000) Increased use of acute beds, unnecessary pain and suffering, and misuse/overuse of health delivery system when families are not supported with quality services.

22. © 2006, The Pallium Project & Canadian Hospice Palliative Care Assn. Permission to use and reproduce in Canada is extended to those working with accredited health delivery organizations, educational institutions, professional associations/regulatory colleges and independently governed community agencies and hospice organizations. Specific Things We Can Do Recognize that living well until death is not “black and white” – it is often many shades of grey involving complex care and needs provided by many. Recognize that many health care professionals might find these issues difficult Learn to “reframe hope” for the long-view. As Family Council members????

23. © 2006, The Pallium Project & Canadian Hospice Palliative Care Assn. Permission to use and reproduce in Canada is extended to those working with accredited health delivery organizations, educational institutions, professional associations/regulatory colleges and independently governed community agencies and hospice organizations. A Starting Point for Resources HNHB Hospice Palliative Care Network http://www.hnhbhpc.net/ Canadian Hospice Palliative Care Association (CHPCA) www.chpca.netwww.chpca.net (see CHPCA Marketplace link)

24. © 2006, The Pallium Project & Canadian Hospice Palliative Care Assn. Permission to use and reproduce in Canada is extended to those working with accredited health delivery organizations, educational institutions, professional associations/regulatory colleges and independently governed community agencies and hospice organizations. Thank You Diane Reid, Palliative Care Consultant – Niagara Diane.reid@hospiceniagara.ca