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 Sub-categories / Topics / Sub-topics
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     + Decedent Characteristics
         + Demographics/Social Factors
              Age
              Gender
              Marital Status
              Race/ethnic group
              Education
              Income
              Occupation
              Faith preference/religion
              Where lived and with whom
              Other
         + Health Status/ Cause of Death
              SF36 in last year
              Functional level in last year
              Physical symptoms in last year
              Psychosocial symptoms in last year
              Cognitive level in last year
              Diagnoses in last year
              Cause of death
              Other
         + Health Beliefs/ Cultural Factors
              Cultural factors
              Death practices (e.g. burial or cremation)
              Trust in providers
              Awareness of prognosis
              Other
         + Individual involvement in healthcare
              Use of advance directives/ surrogates/ HC proxies
              Documented preferences for EOL care
              Have primary care physician
              Historical use of care/ patterns of use
              Other
         + Indicators of social support needs
              Use of social support services
              Perceived need
              Other
     + Patient/Family/Significant Other
         + Caregivers
              Caregiver Availability
              Caregiver Health, Social and Emotional Issues
              Caregiver Relationship to deceased
              Caregiver Age; other demographics
              Other
              Caregivers and decision-making
     + Utilization/Use of Healthcare and Community Services
         + End-of-Life Care (Last year of life)
              Location of death
              Length of time at final setting
              Use of opioids
              Use of hospice or other palliative care
              Spiritual Care
              Use of ICU
              Use of hospitalizations
              Other locations of care
              Transfers in last month
              Treatments (e.g. Surgery, Chemotherapy, Feeding Tubes)
              Use of social support services (Community agencies)
              Other
              Physician Services
         + Grief and Bereavement Care
              Use of bereavement services
              Other
     + Experience/Quality/Outcomes of Care
         + Evaluated Outcomes and Quality of Care
              Pain and symptom management
              Quality of life
              Quality of dying and death
              Bereavement outcomes
              Other
         + Perceived Quality of Care/Outcomes; Patient/Family Satisfaction
              Unmet needs
              Symptom management
              Communication
              Coordination and continuity of care
              Care consistent with preferences
              Emotional and spiritual support
              Community support
              Overall perception of care
              Self-determined life closure
              Other
         + Costs of Care
              Medicare costs in last year of life
              Hospice costs in last year of life
              Out-of-pocket expenses
              Other
     + Healthcare Environment and Community Characteristics
         + Healthcare Services Available
              Level of competition
              HMO enrollment/ penetration of managed care
              Relative price of care (All and EOL)
              Ratio of all HC personnel and facilities to total population and to decedents
              Hospitals (number, size, profit status, palliative care services)
              ICU beds
              # of hospice programs
              Hospice penetration
              # Home health providers
              # Nursing homes
              # Nursing homes with hospice contracts
              Residential/board and care
              Community agencies
              Individual providers by specialty
              # providers certified in palliative care
              Other
              Pediatric Palliative Care
         + Healthcare Policy and Laws
              Medicaid benefit for hospice, nursing home, palliative care, pediatric end-of-life care
              Advance directives laws
              Surrogacy laws
              Pain management laws
              Narcotic prescribing laws
              Other
         + General Community Characteristics
              Median income, racial mix, age distribution
              Percentage of population below poverty level
              Children in poverty
              Index of “rurality”
              Faith communities
              Other
     + Community Support for EOL Care
         + Community Resources for EOL Care
              Faith community support
              Spiritual care providers
              Social support services
              Grief and bereavement services
              Referral Network
              Medical transportation services
              Information availability on Aging Network and EOL care
              Other
         + Healthcare Financing
              Health insurance coverage (including HMO)
              Other
              Prescription Benefit Coverage (Insurance)
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 Geographic Areas Covered
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U.S.A. National Data (not state-by-state)
County-level data is available (availability may vary by state)
Other geographic levels are available
- All States (state-by-state), or narrow to specific states.
Alabama Alaska Arizona
Arkansas California Colorado
Connecticut Delaware District of Columbia
Florida Georgia Hawaii
Idaho Illinois Indiana
Iowa Kansas Kentucky
Louisiana Maine Maryland
Massachusetts Michigan Minnesota
Mississippi Missouri Montana
Nebraska Nevada New Hampshire
New Jersey New Mexico New York
North Carolina North Dakota Ohio
Oklahoma Oregon Pennsylvania
Rhode Island South Carolina South Dakota
Tennessee Texas Utah
Vermont Virginia Washington
West Virginia Wisconsin Wyoming
 Span of Years Covered
 
 When are Data Updated?
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EDELE Edeledata.org is a project of: The Carolinas Center for Hospice & End of Life Care National Hospice and Palliative Care Organization Funded by the US Administration on Aging