Hospice Palliative Care Report to Central LHIN Board

1. Hospice Palliative CareReport to Central LHIN Board May 31, 2011 Dr. Nancy Merrow Chair, HPC Network for CLHIN

2. . Hospice palliative care may complement and enhance disease Definition of Hospice Palliative Care1 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 during the illness and bereavement. 1. Canadian Hospice Palliative Care Association Norms of Practice 2002

3. Who Needs Hospice Palliative Care?1 Hospice palliative care is 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. 1. Canadian Hospice Palliative Care Association Norms of Practice 2002

4. What kind of care is it? Hospice palliative care aims to: • treat all active issues • prevent new issues from occurring • promote opportunities for meaningful and valuable experiences, personal and spiritual growth, and self-actualization Canadian Hospice Palliative Care Association Norms of Practice 2002

5. When do we start Hospice Palliative Care? FOCUS OF CARE Therapy to Modify Disease Hospice Palliative Care Therapy to relieve suffering & improve quality of life DIAGNOSIS ACUTE CHRONIC ADVANCED LIFE THREATENING DEATH BEREAVEMENT PROGRESSION OF DISEASE End of Life Care

6. Current State of HPC in CLHIN 6 hospitals 2 networks CCAC 7 Nursing Agencies 1,651,681 people 5 Cancer programs Umpteen pharmacies EDITH PROTOCOL Family Doctors 3 bed residential hospice 46 Long Term Care Homes HPC Teams Funeral Homes EMS Temmy Latner Centre 12 visiting hospices Faith Based Groups

7. Typical Patient Journey More Chemo? Radiation? What dose? What is Hospice? DNR? Who will Take care of me? Who should I refer to? What is cremation? How much does a funeral cost? Can I die at home?

8. Brief History of the Network HPC Network was created in 2007 as part of the provincial End of Life Strategy “To plan, oversee and evaluate comprehensive hospice palliative care for the residents of the Central Local Health Integrated Network” Volunteer Steering Committee with paid coordinator Budget $70,000

9. Challenges • Voluntary membership • Voluntary leadership • Limited budget • Coordinator position was hard to recruit and maintain • No “presence” • No accountability from or to members for action or involvement • No data

10. Successes • Strategic Plan • Environmental Scan • 3 Annual Networking Education Days • Consultation body for various projects including the Hospice Palliative Care Teams for CLHIN Aging at Home funded program

11. HPC Teams • Funded by Aging at Home in 2008 • Expanded in 2010 • Partnership between CCAC, Southlake Regional Health Centre, and Temmy Latner Centre for Palliative Care • Integrated the pre-existing Regional Pain & Symptom Management Consultation Team

12. HPC Teams continued • Housed with small admin office at Stronach Regional Cancer Centre • Program Lead, Nurse Manager, admin assistant • 5 Clinical Nurse Consultants • Work out in community • Consulting with providers and clients • Providing education

13. HPC Team Products • Website • Average new referrals 75 per month • Average 300 patients on caseload at all times • 90% of patients dying in setting of choice • Average 40 ER Visits avoided per month • Analysis of reasons for transfer to ER • Analysis of reasons preference for place of death not met • In home chart

14. HPC TeamsKnowledge Transfer & Exchange • Weekly case consultation meetings at local hospices • Education sessions at long term care homes • Cancer Care Ontario Symptom Guides training in collaboration with CCO • Expected Death in the Home Protocol • Symptom Relief Kit

15. Next Steps for HPC Teams – One time funded projects • Comprehensive team based education for primary care and long term care providers • Case based real time teaching and mentoring • 24 hour response to avoid transfer to ER • Research study on barriers to primary care involvement in HPC • Research study on outcomes of mentoring

16. Long Term Goals for HPC Teams • Physical location • Add physicians and psychosocial expertise to teams • Integrate physician teams • Enhanced 24x 7 crisis response* (story) • Expand teams to improve access – need 8 Clinical Nurse Consultants for full geographic coverage

17. Successes in other LHINs • Champlain LHIN network recognized the need for a comprehensive integrated program for the Ottawa area. • Undertook an extensive planning and engagement process over one year. • On line survey • Facilitated sessions • Email feedback

18. Outcomes in Champlain LHIN • Establishment of a regional HPC program accountable to the LHIN • A Leadership Council to over see the program • Formal agreements with service providers to • Support the objectives of the program • Incorporate standards and competencies • Establish performance indicators for evaluation and program planning

19. A HPC Program for CLHIN • Strategy, planning and research • Management of the HPC Program • Access, Performance and Accountability • Clinical Excellence • Person and Family Advisory Group • Community Engagement • Provider care and Development • Education and knowledge translation, capacity building • Public reporting

20. Hospice Palliative Care for CLHIN

21. Model for HPC in CLHIN CIRCLE OF ACCOUNTABILITY

22. The Future of Hospice Palliative Care for CLHIN Cancer centre A Good Death Complete Care Plan Long term care CCAC Hospital HPC Teams Hospice Bereavement care Primary care Transport DNR EDITH Protocol Home Home Care

23. LHIN Support The Central Hospice Palliative Care Network steering committee unanimously recommends that the Central LHIN dissolve the network and approve the formation of a Transition Strategy Team to lead a planning and engagement process to create a comprehensive Hospice Palliative Care Program for the LHIN

24. Thank you !