Developing a PopulationBased End of Life Care Surveillance System

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Developing a Population-Based End of Life Care
Surveillance System

• Using Linked Administrative Databases

• 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

and Alison Zwaagstra, BHIM, MHI, CHIM NELS ICE
Health Information Analyst
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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)

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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.

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Existing and Proposed EOL Data Linkages
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End of Life Care Data Development/Linkage

• Collaboration with Cancer Care Nova Scotia for
  gt10 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

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Essential Palliative Care Program Data Fields

• For EOL record linkage
• Patients 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

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Population-Wide End of Life Data Collection

• 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

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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 lt30 for persons with COPD
• Commencement of renal dialysis
• Care providers include PCP, telehealth,
  hospital emergency department, plus the persons
  family physician, pharmacist, spiritual care,
  nursing home, home care and/or other support

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Who could benefit from palliative care services?
Minimal estimate
Nova Scotia deaths, six years 2000-2005 (n
47,895)
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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
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Planning for Needs End of Life Trajectories
Cancer, Motor neuron disease, HIV-related
disease, Chronic renal failure
Lunney, Lynn, Foley, Lipson, Guralnik. Patterns
of functional decline at end of life JAMA
2003 2892387-2392.
Accidental death Falls, Trauma
Alzheimers disease and dementia Neurological
decline Late effects of stroke
Congestive heart failure Chronic obstructive
pulmonary disease
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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
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Quality Care Indicators NS Ontario linked end
of life care databases

• Hospital days in the last month of life
• Frequency of emergency room visits
• Family physician visits
• Place of death home versus in-hospital
• 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
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4. In-hospital deaths, selected underlying causes
All ages, Nova Scotia, 1998-2005
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5. Palliative care program enrollment for adults
dying of cancer, 1996 to 2005, Cape Breton and
Capital Health
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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
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Comments, Questions?