1. Developing a Population-Based End of Life Care Surveillance System Grace Johnston, MHSA, PhD NELS ICE Principal Investigator, Professor, School of Health Administration, Dalhousie University, Halifax, NS and Epidemiologist, Cancer Care Nova Scotia Minimum Data Set Workshop St. Francis Xavier University, Antigonish, NS April 24, 2009 Using Linked Administrative Databases and Alison Zwaagstra, BHIM, MHI, CHIM NELS ICE Health Information Analyst

2. Network for End of Life Studies (NELS) Long term (10+ years) series of projects by Halifax based researchers to investigate end of life care Interdisciplinary Capacity Enhancement (ICE) Canadian Institutes for Health Research (CIHR) grant: “Reducing Health Disparities and Promoting Equity for Vulnerable Populations” (2006-2011)

3. NELS ICE Data Definitions Palliative Care Program (PCP) data Patient specific data collected during time in PCP, e.g., demographic, clinical characteristics, and service provision used to support PCP activities in each district health authority (DHA). End of life (EOL) linked data set Persons who could benefit from palliative support are identified retrospectively from Vital Statistics (VS). Patterns of service use in last months of life can be described by linking their VS record to PCP and other available administrative data.

4. Existing and Proposed EOL Data Linkages

5. End of Life Care Data Development/Linkage Collaboration with Cancer Care Nova Scotia for >10 years Linked with ICONS cardiac data for congestive heart failure Now working with renal and other chronic disease programs Nova Scotia PCP data development and linkage IWK Health centre for children and youth (Gerri Frager) Capital Health (CDHA) and Cape Breton (CBDHA) PCP data linkages to cancer registry deaths Numerous reports and published papers Palliative Care Program data in DHAs 1-7 Report prepared by J Kapra in collaboration with NELS ICE, CCNS, NSHPCA. A few years of electronic data are now available in Annapolis Valley and Colchester-East Hants

6. Essential Palliative Care Program Data Fields For EOL record linkage: Patient’s first and last name Date of birth Health card number For PCP access and wait time: Date of referral to and date of assessment by PCP GOAL 1: Agree on province-wide standardized collection for these essential PCP data fields

7. Population-Wide End of Life Data Collection regardless of location of care GOAL 2: Agreement on additional data collection for all persons dying of terminal chronic disease regardless of location of care, e.g., PCP, long term care facility, home care, hospital Examples: Diagnoses Symptoms Quality indicators Outcomes Vulnerable population identifier

8. Vision: Gold HELP web portal by 2015 Data from real-time online registration and coordinated 24/7 Hospice, End of Life, Palliative (HELP) for persons with late stage chronic conditions, their next of kin, and care providers* beginning at time that potential need is identified, e.g. Late stage diagnosis or recurrence of cancer FEV of <30 for persons with COPD Commencement of renal dialysis * Care providers include PCP, telehealth, hospital emergency department, plus the person’s family physician, pharmacist, spiritual care, nursing home, home care and/or other support

9. Who could benefit from palliative care services? Minimal estimate Nova Scotia deaths, six years: 2000-2005 (n = 47,895) Underlying cause of death N % of all deaths Neoplasms14,45430.2 COPD2,3364.9 Alzheimer’s disease1,4363.0 Heart failure1,3582.8 Renal failure9342.0 Parkinson’s disease3610.8 Motor neuron disease (ALS)1360.3 Liver failure1110.2 HIV/AIDS350.1 Huntington’s disease300.1 TOTAL 21,19144.2

10. Who could benefit from palliative care services? Maximal estimate Deaths from all causes except During pregnancy, childbirth, puerperium or perinatal period Injury, poisoning, and other external causes 45,297 in Nova Scotia, 2000-2005, 94.6% of all deaths (n = 47,895, excludes 13 records missing an underlying cause of death) Minium/maximum estimate method from: Rosenwax LK, Blackmore AM, & Holman CDJ. Estimating the size of a potential palliative care population. Palliative Medicine 2005; 19: 556-562

11. Planning for Needs: End of Life Trajectories Accidental death Falls, Trauma Cancer, Motor neuron disease, HIV-related disease, Chronic renal failure Congestive heart failure Chronic obstructive pulmonary disease Alzheimer’s disease and dementia Neurological decline Late effects of stroke Lunney, Lynn, Foley, Lipson, Guralnik. Patterns of functional decline at end of life JAMA 2003 289:2387-2392.

12. NS deaths by dying trajectory, 2000-2005 Method from: Fassbender K et al ( 2006) Costs and Utilization of Health Care Services at End-of-Life. Institute for Public Economics Health Research Group, Edmonton, AB

13. Quality Care Indicators: NS & Ontario linked end of life care databases 1.Hospital days in the last month of life 2.Frequency of emergency room visits 3.Family physician visits 4.Place of death: home versus in-hospital 5.Palliative care service (Capital Health and Cape Breton) Grunfeld E, Lethbridge L, Dewar R, Lawson B, Paszat LF, Johnston G, Burge F, McIntyre P, Earle CC. (2006) Towards using administrative databases to measure population-based indicators of quality end-of-life care: testing the methodology. Palliative Medicine, 20, 769-777

14. 4. In-hospital deaths, selected underlying causes All ages, Nova Scotia, 1998-2005

15. 5. Palliative care program enrollment for adults dying of cancer, 1996 to 2005, Cape Breton and Capital Health

16. Surveillance Reports In planning CCNS Indicator Report Canadian Cancer Statistics 2010 NELS ICE Equity Report CIHI Atlantic End of Life Care Report Feasibility Study Reports available at: www.nels.dal.ca

17. Supported by: www. nels.dal.ca

18. Comments, Questions?