Briefing Agenda

1. Quality Care for Progressive Chronic and Life-limiting IllnessServing Our Populations WellA briefing for local system/community leaders

2. Briefing Agenda • Introduction • View Dying For Care – Towards Quality End-of-life Care (16 minutes) • Discussion of key messages • Review of CHPCA Model to Guide HPC • Debrief about common myths, barriers and issues impeding quality care • Same time, next year?

3. View Dying For Care • Dying For Care is a 16 minute video intended to help focus/inform dialogue locally. • It is a compilation of insights based on semi-structured interviews with Hospice Palliative Care leaders conducted in late 2005. • It reflects perspectives from a cross-section of professions and leaders from coast-to-coast. • It has been designed principally for use by board-level, senior executive and senior medical leaders of Canada’s health delivery systems. • We will debrief at the conclusion of the video.

4. Video Debriefing • What “surprised” you as you watched? • What “concerned” you as you watched? • What are important messages that you believe are issues/resonate for you locally? • Is there anything that you are now going to think about differently?

5. 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 Care Coalition of Canada (QELCCC)

6. Positioning For Change • 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. • If healthy populations is our accountability, we need to think differently about our abilities and responsibilities.

7. 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.

8. Hospice Palliative Care (HPC)

9. 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.

10. 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 facilities (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.

11. Breaking Down Barriers • Quality in HPC service design is best guided by seeing the misuse, under-use and overuse of system resources. • Specific initiatives to improve continuity of care across home, hospital, hospice, long-term/continuing care and other community-based settings is crucial. • Improving linkages between family practice locally and specialists at referral sites is essential, especially when serious illness transitions to life-limiting illness. • Earlier engagement of patients/families in practical and advanced care planning is a key building block. • HPC philosophy part of the culture/all services, with access to palliative services and supports.

12. Same Time, Next Year • What specific, tangible things would you like to look back and say we have achieved this time next year? • Some starting points…. • A local/regional inter-agency HPC Council or committee (improving community-based care across settings). • A local/regional HPC renewal project • A local/regional advanced care planning awareness campaign • Quality improvement project linked to accreditation processes • Local medical staff and staff engagement/education in improved care coordination/issues management/pain & symptom skills.

13. Closing Thoughts • Changing our local/regional cultures of care will take time and a concerted effort. • Earlier and better engagement of care for those with progressive chronic and life-limiting illness is essential to the citizen confidence in knowing “the system” will be there when they and their families need it. • If we are thoughtful and design HPC well, we will not only do the right thing, but likely manage our scarce health care dollars and human resources much better. • The local/regional systems, services and supports that we create today are the ones that we and our loved ones will also live and die by…

14. A Starting Point for More Info… Canadian Hospice Palliative Care Association (CHPCA) www.chpca.net (see CHPCA Marketplace link) Canadian Virtual Hospice www.virtualhospice.ca End-of-Life/Palliative Education Resource Centre (US site) www.eperc.mcw.edu Living Lessons (Increasing awareness of HPC in Canada) www.living-lessons.org