California – Data on Dying and End-of-Life Experience

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California Cancer Registry Mortality Query System




	Record ID: 587

Presented by	California Department of Health Services
Primary Source of Data	California Cancer Registry
Additional Information	You can query this system based on county, site of cancer, year, gender, and race/ethnicity. Just click on the items of choice in the pull down menu.
Topics	Demographics/Social Factors; Health Status/ Cause of Death
Sub-topics	Cause of death; Gender; Race/ethnic group
Data Type(s)	Customized Data via Querying/Searching
Data Display(s)	Map; Narrative; Table
Data Updates	Data are updated regularly
Span of Years	Generally includes 3 or more years
Geographic Levels	State(s): California Counties: County data is available.
URL for Web Page	http://cancer-rates.info/ca/camort.html

California Deaths by Disease Category




	Record ID: 565

Presented by	California Center for Health Statistics
Primary Source of Data	California Vital Statistics
Additional Information	The Office of Health Information and Research within the California Center for Health Statistics produces a variety of reports on deaths due to various diseases and includes age, race/ethnicity, and gender. This webpage provides links to the reports which are available online.
Most Relevant Pages	There are various reports on this page. Scroll down and click on the report and year that you are interested in. Reports are listed in alphabetical order by title.
Topics	Demographics/Social Factors; Health Status/ Cause of Death
Sub-topics	Age; Cause of death; Gender; Race/ethnic group
Data Type(s)	Static (non-customizable) Data
Data Display(s)	Bar Graph; Line Graph; Narrative; Pie Graph; Table
Data Updates	Data are updated regularly
Span of Years	Generally includes 3 or more years
Geographic Levels	State(s): California Counties: County data is available. Other: Other geographic data is available.
URL for Web Page	http://www.cdph.ca.gov/data/statistics/Pages/default.aspx

California Mortality Statistics




	Record ID: 336

Presented by	California Center for Health Statistics
Primary Source of Data	California Vital Statistics
Additional Information	The Vital Statistics of California is an annual report which contains statistical tabulations of births, deaths, and fetal deaths. This webpage provides links to those editions which are available as Portable Document Format (PDF) files. You will need Adobe Acrobat Reader 5.0 (or higher) to view or print the available documents
Topics	Demographics/Social Factors; Health Status/ Cause of Death
Sub-topics	Age; Cause of death; Gender; Race/ethnic group; Where lived and with whom
Data Type(s)	Static (non-customizable) Data
Data Display(s)	Table
Data Updates	Data are updated regularly
Span of Years	Generally includes 3 or more years
Geographic Levels	State(s): California Counties: County data is available. Other: Other geographic data is available.
URL for Web Page	http://www.cdph.ca.gov/programs/ohir/Pages/VSofCAPriorReport...

California Mortality Statistics (Data Tables)




	Record ID: 333

Presented by	California Center for Health Statistics
Primary Source of Data	California Vital Statistics
Additional Information	These tables are easily accessed via PDF.
Topics	Demographics/Social Factors; End-of-Life Care (Last year of life); Health Status/ Cause of Death
Sub-topics	Age; Cause of death; Education; Gender; Location of death; Race/ethnic group; Where lived and with whom
Data Type(s)	Static (non-customizable) Data
Data Display(s)	Table
Data Updates	Data are updated regularly
Span of Years	Generally includes 3 or more years
Geographic Levels	State(s): California Counties: County data is available. Other: Other geographic data is available.
URL for Web Page	http://www.cdph.ca.gov/data/statistics/Pages/DeathStatistica...

California Mortality Statisticts (Query System)




	Record ID: 334

Presented by	California Center for Health Statistics
Primary Source of Data	California Vital Statistics
Additional Information	The Vital Statistics Query System has been developed to provide an interactive Internet interface to obtain tabular summaries and statistical reports from California's birth and death vital statistics databases. The selection process is broken down into four levels. Identifies the year of the event and statistical selection Allows the choice of an individual county or the entire state Select the database and the primary selection criteria (row condition) Allows the query to be tailored to a specific result (column condition)
Topics	Demographics/Social Factors; End-of-Life Care (Last year of life); Health Status/ Cause of Death
Sub-topics	Age; Cause of death; Gender; Location of death; Race/ethnic group; Where lived and with whom
Data Type(s)	Customized Data via Querying/Searching
Data Display(s)	Table
Data Updates	Data are updated regularly
Span of Years	Generally includes 3 or more years
Geographic Levels	State(s): California Counties: County data is available. Other: Other geographic data is available.
URL for Web Page	http://www.applications.dhs.ca.gov/vsq/default.asp

Facts on Dying (State Profiles)




	Record ID: 36

Presented by	Center for Gerontology and Health Care Research at the Brown Medical School
Primary Source of Data	HCFA - Minimum Data Set; National Center for Health Statistics
Additional Information	For each state a profile is provided of 12 end-of-life indicators including: site of death, advance directive use, DNR, artificial nutrition and hydration, and feeding tube use.
Topics	End-of-Life Care (Last year of life); Evaluated Outcomes and Quality of Care; Health Status/ Cause of Death; Individual involvement in healthcare
Sub-topics	Cognitive level in last year; Location of death; Pain and symptom management; Treatments (e.g. Surgery, Chemotherapy, Feeding Tubes); Use of advance directives/ surrogates/ HC proxies
Data Type(s)	Static (non-customizable) Data
Data Display(s)	Table
Data Updates	Data describe one point in time
Span of Years	Generally includes 3 or more years
Geographic Levels	National: National data is available. States: State data is available.
URL for Web Page	http://www.chcr.brown.edu/dying/stateprofiles.htm

Facts on Dying (Change in Indicators Over Time)




	Record ID: 37

Presented by	Center for Gerontology and Health Care Research at the Brown Medical School
Primary Source of Data	HCFA - Minimum Data Set; National Center for Health Statistics
Additional Information	Change in 12 indicators of end-of-life care over 1999-2001, by state. Patients are primarily though not exclusively nursing home residents. Indicators include site of death, pain management, advance directive use, DNR, artificial hydration and nutrition, and feeding tube use.
Topics	End-of-Life Care (Last year of life); Evaluated Outcomes and Quality of Care; Health Status/ Cause of Death; Individual involvement in healthcare
Sub-topics	Cognitive level in last year; Location of death; Pain and symptom management; Treatments (e.g. Surgery, Chemotherapy, Feeding Tubes); Use of advance directives/ surrogates/ HC proxies
Data Type(s)	Static (non-customizable) Data
Data Display(s)	Bar Graph; Line Graph
Data Updates	Data describe one point in time
Span of Years	Generally includes 3 or more years
Geographic Levels	States: State data is available.
URL for Web Page	http://www.chcr.brown.edu/dying/CHANGEOVERTIME.HTM

Hospice Facts and Statistics




	Record ID: 575

Presented by	National Association for Home Care and Hospice
Primary Source of Data	Centers for Medicare and Medicaid Services
Most Relevant Pages	Table 1: Number of Medicare-certified Hospices, by Auspice, 1984-2008; Table 2: Number of Medicare-certified Hospices and Program Payments, by State, 2007 ; Table 3: Distribution of Hospice Primary Payment Source, 1996 & 2007; Table 5: Medicare Hospice Outlays, Clients, Days per Client, and Dollar Amount Per Client, FY89-FY2003 and CY2004-CY2006; Table 7: Medicare Hospice Utilization by Type of Care, FY2002-FY2005; Table 10: Medicaid Hospice Outlays, FY 2004-2010; and more..... (pgs 8-19)
Topics	Costs of Care; End-of-Life Care (Last year of life); Healthcare Services Available
Sub-topics	# of hospice programs; Hospice costs in last year of life; Hospice penetration; Medicare costs in last year of life; Use of hospice or other palliative care
Data Type(s)	Static (non-customizable) Data
Data Display(s)	Bar Graph; Table
Data Updates	Data are updated regularly
Span of Years	Generally includes 1-2 years
Geographic Levels	States: State data is available.
URL for Web Page	http://www.nahc.org/facts/HospiceStats09.pdf

Medicaid Benefits - Online Database: Hospice Care (2008)




	Record ID: 409

Presented by	Kaiser Family Foundation
Primary Source of Data	Medicaid State Plans
Additional Information	Medicaid Benefits survey data from 2003, 2004, 2006 and 2008 with information about benefits covered, limits, co-payments and reimbursement methodologies for the 50 states, the District of Columbia and the Territories. Also indicates whether benefits extend to the Categorically Needy (CN), the Medically Needy (MN) or both. See the state-specific footnotes for additional information.
Topics	Healthcare Policy and Laws
Sub-topics	Medicaid benefit for hospice, nursing home, palliative care, pediatric end-of-life care
Data Type(s)	Static (non-customizable) Data
Data Display(s)	Map; Narrative; Table
Data Updates	Data describe one point in time
Span of Years	Generally includes 1-2 years
Geographic Levels	States: State data is available. Other: Other geographic data is available.
URL for Web Page	http://medicaidbenefits.kff.org/service.jsp?yr=4&so=0&cat=1&...

Medicare Hospice Utilization by State - Calendar Year 2006




	Record ID: 548

Presented by	U.S. Department of Health and Human Services
Primary Source of Data	Centers for Medicare and Medicaid Services
Additional Information	Total Patients, Total Reimbursement, Total Covered Days, Total Covered Hours, Total Covered Procedures, Average Reimbursement Per Patient, Average Days Per Patient
Topics	Costs of Care; End-of-Life Care (Last year of life)
Sub-topics	Hospice costs in last year of life; Medicare costs in last year of life; Use of hospice or other palliative care
Data Type(s)	Static (non-customizable) Data
Data Display(s)	Table
Data Updates	Data are updated regularly
Span of Years	Generally includes 1-2 years
Geographic Levels	States: State data is available.
URL for Web Page	http://www.cms.hhs.gov/MedicareFeeforSvcPartsAB/Downloads/Ho...

Pain Policy Database of State Laws and Regulations




	Record ID: 511

Presented by	Pain & Policy Studies Group University of Wisconsin Comprehensive Cancer Center
Primary Source of Data	State Regulations, Laws and Policies
Additional Information	Pain Policy - database of State Laws, Regulations, and Other Official Governmental Policies
Most Relevant Pages	Scroll down to get a US map to select a specific state or go to alpabetically listing of states.
Topics	Healthcare Policy and Laws
Sub-topics	Narcotic prescribing laws; Pain management laws
Data Type(s)	Static (non-customizable) Data
Data Display(s)	Map; Narrative; Table
Data Updates	Data are updated regularly
Span of Years	Generally includes 3 or more years
Geographic Levels	States: State data is available.
URL for Web Page	http://www.painpolicy.wisc.edu/matrix.htm

Snapshot: Death and Dying in California




	Record ID: 555

Presented by	California HealthCare Foundation
Primary Source of Data	California HealthCare Foundation
Additional Information	This report compiles data from various sources including studies published in journals, the Census Bureau, and state agencies in California.
Most Relevant Pages	Death rates, cause of death, age, race/ethnicity, location on pages 3 through 10 of 30. Decision making for decedent on page 7 of 30. Costs of care on pages 19 through 24. Palliative care services in hospitals on page 25. Key legislation on end of life care presented on page 27 of 30.
Topics	Costs of Care; Demographics/Social Factors; End-of-Life Care (Last year of life); Health Status/ Cause of Death; Healthcare Policy and Laws; Healthcare Services Available; Individual involvement in healthcare
Sub-topics	Advance directives laws; Age; Cause of death; Hospice costs in last year of life; Hospitals (number, size, profit status, palliative care services); Location of death; Medicare costs in last year of life; Narcotic prescribing laws; Other; Out-of-pocket expenses; Pain management laws; Race/ethnic group; Use of advance directives/ surrogates/ HC proxies
Data Type(s)	Static (non-customizable) Data
Data Display(s)	Bar Graph; Narrative; Pie Graph; Table
Data Updates	Data describe one point in time
Span of Years	Generally includes 3 or more years
Geographic Levels	State(s): California
URL for Web Page	http://www.chcf.org/documents/chronicdisease/DeathDyingSnaps...

Snapshot: Hospice in California, A look at Cost and Quality




	Record ID: 556

Presented by	California HealthCare Foundation
Primary Source of Data	California HealthCare Foundation
Additional Information	This report provides a snapshot of hospice use, cost, and quality in California from 1996 to 2004.
Topics	Costs of Care; End-of-Life Care (Last year of life); Healthcare Services Available
Sub-topics	Hospice costs in last year of life; Hospice penetration; Use of hospice or other palliative care
Data Type(s)	Static (non-customizable) Data
Data Display(s)	Bar Graph; Map; Narrative; Pie Graph; Table
Data Updates	Data describe one point in time
Span of Years	Generally includes 3 or more years
Geographic Levels	State(s): California
URL for Web Page	http://www.chcf.org/documents/hospitals/HospiceSnapshotCostQ...

State Health Facts Online (Medicare Hospice Days and Prescription Benefit Coverage)




	Record ID: 56

Presented by	Kaiser Family Foundation
Primary Source of Data	Centers for Medicare and Medicaid Services - Office of Information Services
Additional Information	Statehealthfacts.org provides data on more than 500 health topics. Navigate the site by choosing a category or an individual state profile. Information is updated annually.
Most Relevant Pages	Scroll down the left hand side to select information about the Medicare Prescription Drug Plan and hospice use (located under Medicare Service Use).
Topics	End-of-Life Care (Last year of life); Healthcare Financing
Sub-topics	Prescription Benefit Coverage (Insurance); Use of hospice or other palliative care
Data Type(s)	Raw/Downloadable Data for offline use; Static (non-customizable) Data
Data Display(s)	Map; Table
Data Updates	Data are updated regularly
Span of Years	Generally includes 1-2 years
Geographic Levels	National: National data is available. States: State data is available.
URL for Web Page	http://www.statehealthfacts.org/comparecat.jsp?cat=6

“AARP - Policy and Research” has 3 results below

Requirements on this main website: Registration? No — Payment? No — Special Software? No

Reforming the Health Care System - 2005 State Profile (General Community Characteristics)




	Record ID: 331

Presented by	AARP - Policy and Research
Primary Source of Data	AARP Public Policy Institute; American Medical Association; Centers for Medicare and Medicaid Services; US Census Bureau Data
Additional Information	This compilation of state profiles offers readers a snapshot of each state's health care landscape by providing comparable state-level and national data for nearly 100 indicators. This includes state profiles, recent data on state demographics, expenditures and financing, health status, health coverage and the uninsured, available resources, Medicare, Medicaid, utilization of services, and key trends. Also included are state rankings for nearly every health care indicator and state maps on current health care reform issues. In addition to the full report, a profile for each individual state is available separately.
Most Relevant Pages	Click on individual state and then page 3 of 8 - Demographics section.
Topics	General Community Characteristics
Sub-topics	Index of “rurality”; Median income, racial mix, age distribution; Percentage of population below poverty level
Data Type(s)	Static (non-customizable) Data
Data Display(s)	Narrative; Table
Data Updates	Data are updated regularly
Span of Years	Generally includes 1-2 years
Geographic Levels	National: National data is available. States: State data is available.
URL for Web Page	http://assets.aarp.org/rgcenter/health/d18258_reform_05.pdf

State Health Care Briefs 2009: Why Health Care Reform is Important




	Record ID: 10

Presented by	AARP - Policy and Research
Primary Source of Data	AARP Public Policy Institute; Kaiser Family Foundation State Health Facts
Additional Information	This set of State Health Care Briefs provides a one-page overview of facts on health care data for each of the 50 states and the District of Columbia. Information is provided about each state’s older population, the uninsured, Medicare beneficiaries including those who fall into the “doughnut hole,” hospital re-admissions among Medicare beneficiaries, the distribution of Medicaid long-term care funds, and prescription drug spending.
Topics	End-of-Life Care (Last year of life); Healthcare Financing
Sub-topics	Health insurance coverage (including HMO); Prescription Benefit Coverage (Insurance); Use of hospitalizations
Data Type(s)	Static (non-customizable) Data
Data Display(s)	Narrative; Pie Graph
Data Updates	Data are updated regularly
Span of Years	Generally includes 1-2 years
Geographic Levels	National: National data is available. States: State data is available.
URL for Web Page	http://www.aarp.org/health/health-care-reform/info-06-2009/s...

Valuing the Invaluable: A New Look at State Estimates of the Economic Value of Family Caregiving




	Record ID: 592

Presented by	AARP - Policy and Research
Primary Source of Data	AARP Public Policy Institute
Additional Information	Table 1: Number of Caregivers and the Economic Value of Caregiving, by State, 2006
Most Relevant Pages	Pg 3 of 8
Topics	Caregivers
Sub-topics	Caregiver Availability; Other
Data Type(s)	Static (non-customizable) Data
Data Display(s)	Bar Graph; Narrative; Table
Data Updates	Data describe one point in time
Span of Years	Generally includes 1-2 years
Geographic Levels	States: State data is available.
URL for Web Page	http://assets.aarp.org/rgcenter/il/dd158_caregiving.pdf

“American Journal of Respiratory and Critical Care Medicine -- Online” has 1 results below

Requirements on this main website: Registration? No — Payment? No — Special Software? No

A National Survey of End-of-life Care for Critically Ill Patients




	Record ID: 599

Presented by	American Journal of Respiratory and Critical Care Medicine
Primary Source of Data	Survey by Veterans Administration Medical Center, White River Junction, Vermont
Additional Information	This study obtained data from 131 ICUs at 110 institutions in 38 states. It describes the use of or withdrawal of life support and CPR, and whether DNR's were in place.
Most Relevant Pages	Table 2 presents patient data on ICU deaths, full or withholding CPR, and withholding or withdrawing life support Table 3 presents characteristics of the hospitals in the study including the region they were located, admissions, ICU deaths, CPR, DNR, withholding or withdrawing life support
Topics	End-of-Life Care (Last year of life); Individual involvement in healthcare
Sub-topics	Treatments (e.g. Surgery, Chemotherapy, Feeding Tubes); Use of advance directives/ surrogates/ HC proxies; Use of ICU
Data Type(s)	Static (non-customizable) Data
Data Display(s)	Bar Graph; Line Graph; Narrative; Table
Data Updates	Data describe one point in time
Span of Years	Generally includes 3 or more years
Geographic Levels	States: State data is available. Other: Other geographic data is available.
URL for Web Page	http://ajrccm.atsjournals.org/cgi/content/full/158/4/1163

“California Cancer Registry” has 1 results below

Requirements on this main website: Registration? No — Payment? No — Special Software? No

California Cancer Registry Publications




	Record ID: 588

Presented by	California Department of Health Services
Primary Source of Data	California Cancer Registry
Additional Information	This site links you to various publications developed by the California Cancer Registry. Scroll down and click on the publication of interest.
Topics	Demographics/Social Factors; Health Status/ Cause of Death
Sub-topics	Age; Cause of death; Diagnoses in last year; Race/ethnic group
Data Type(s)	Static (non-customizable) Data
Data Display(s)	Map; Narrative; Table
Data Updates	Data are updated regularly
Span of Years	Generally includes 3 or more years
Geographic Levels	State(s): California Counties: County data is available.
URL for Web Page	http://www.ccrcal.org/Publications.html

“California Center for Health Statistics” has 2 results below

Requirements on this main website: Registration? No — Payment? No — Special Software? Adobe Acrobat Reader, Excel

Alzheimer’s Disease Deaths in California, 2005




	Record ID: 563

Presented by	California Center for Health Statistics
Primary Source of Data	California Vital Statistics
Additional Information	This report presents data on California's Alzheimer’s disease deaths for 2005. It provides analysis of crude and age-adjusted death rates for California residents by sex, age, and race/ethnicity. Alzheimer’s disease data are extracted from vital statistics records with deaths attributed to Alzheimer’s disease as defined by the International Classification of Diseases, Tenth Revision (ICD-10) code G30 in accordance with the National Center for Health Statistics (NCHS).
Most Relevant Pages	Previous years of California Alzheimer's disease deaths can be found at: http://www.dhs.ca.gov/hisp/chs/OHIR/reports/ Scroll down to find appropriate report.
Topics	Demographics/Social Factors; Health Status/ Cause of Death
Sub-topics	Age; Cause of death; Gender; Race/ethnic group
Data Type(s)	Static (non-customizable) Data
Data Display(s)	Bar Graph; Line Graph; Narrative; Pie Graph; Table
Data Updates	Data are updated regularly
Span of Years	Generally includes 1-2 years
Geographic Levels	State(s): California Counties: County data is available. Other: Other geographic data is available.
URL for Web Page	http://www.cdph.ca.gov/pubsforms/Pubs/OHIRalzheimer2005.pdf

Cancer Deaths California, 2005




	Record ID: 564

Presented by	California Center for Health Statistics
Primary Source of Data	California Vital Statistics
Additional Information	This report presents data on California’s cancer deaths focusing on 2005 with data tables displaying the number of cancer deaths by race/ethnicity, age, and sex. The report also provides analysis of crude and age-adjusted death rates for California residents with data that were extracted from vital statistics records with deaths attributed to cancer as defined by the International Classification of Diseases, Tenth Revision (ICD-10) codes C00-C97 in accordance with the National Center for Health Statistics (NCHS) Reports.
Most Relevant Pages	Previous years of California Cancer deaths can be found at: http://www.dhs.ca.gov/hisp/chs/OHIR/reports/ Scroll down to find appropriate report.
Topics	Demographics/Social Factors; Health Status/ Cause of Death
Sub-topics	Age; Cause of death; Gender; Race/ethnic group
Data Type(s)	Static (non-customizable) Data
Data Display(s)	Bar Graph; Line Graph; Narrative; Pie Graph; Table
Data Updates	Data are updated regularly
Span of Years	Generally includes 3 or more years
Geographic Levels	State(s): California Counties: County data is available. Other: Other geographic data is available.
URL for Web Page	http://www.cdph.ca.gov/pubsforms/Pubs/OHIRcancer2005.pdf

There are 56 records found in edeledata.org across 24 main websites. View Pages: 1 2 3 4 5 All

Note to visitors: The information provided above was researched and organized by EDELE staff. The look and content of the web pages and websites listed here may have changed since they were recorded in the EDELE database. (Some sites may no longer be available.) If you find that any of the information on this page is out-of date or incorrect, or if you have problems reaching the designated URL, please let EDELE staff know by filling out an error-report e-mail.

The URLs lead to outside websites that are controlled by the organization(s) that own those sites, not by EDELE. If you have any feedback, questions, comments, or concerns about the information on these outside sites, contact the organization hosting that site, not EDELE.