New York – Data on Dying and End-of-Life Experience

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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

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...

New York Cancer Incidence and Mortality by Age, Gender & Race




	Record ID: 470

Presented by	New York Department of Health
Primary Source of Data	New York State Cancer Registry
Additional Information	Cancer mortality rates by gender, race, age and site of cancer.
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)	Map; Table
Data Updates	Data are updated regularly
Span of Years	Generally includes 1-2 years
Geographic Levels	State(s): New York Counties: County data is available. Other: Other geographic data is available.
URL for Web Page	http://www.health.state.ny.us/statistics/cancer/registry/nys...

New York City Summary of Vital Statistics




	Record ID: 482

Presented by	New York City Department of Health and Mental Hygiene
Primary Source of Data	New York City Offices of Vital Records and Vital Statistics
Additional Information	Summary of vital statistics for New York City for multiple years.
Most Relevant Pages	Tables 2, 3, 4, 5 and 9.
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
Data Type(s)	Static (non-customizable) Data
Data Display(s)	Narrative; Table
Data Updates	Data are updated regularly
Span of Years	Generally includes 3 or more years
Geographic Levels	State(s): New York Other: Other geographic data is available.
URL for Web Page	http://www.nyc.gov/html/doh/html/pub/pub.shtml?t=vs

New York Mortality Statistics




	Record ID: 376

Presented by	New York Department of Health
Primary Source of Data	New York Department of Health
Additional Information	This site links you to various New York mortality statistics tables by year.
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)	Table
Data Updates	Data are updated regularly
Span of Years	Generally includes 3 or more years
Geographic Levels	State(s): New York Counties: County data is available. Other: Other geographic data is available.
URL for Web Page	http://www.health.state.ny.us/nysdoh/vital_statistics/index....

New York State - Medical Orders for Life Sustaining Treatment (MOLST)




	Record ID: 474

Presented by	Rochester Health Commission
Primary Source of Data	Rochester Health Care Forum
Additional Information	The Department of Health has approved a physician order form, the Medical Orders for Life Sustaining Treatment (MOLST), that can be used statewide by health care providers and facilities as the legal equivalent of an inpatient Do Not Resuscitate (DNR) form. MOLST was created by the Community-wide End of Life Palliative Care Initiative to provide a single document that would function as an actionable medical order and could transition with a patient through all health care settings.
Topics	Healthcare Policy and Laws
Sub-topics	Advance directives laws
Data Type(s)	Static (non-customizable) Data
Data Display(s)	Narrative
Data Updates	Data describe one point in time
Span of Years	Generally includes 3 or more years
Geographic Levels	State(s): New York
URL for Web Page	http://www.compassionandsupport.org/index.php/legislation

New York Statewide Planning and Research Cooperative System




	Record ID: 469

Presented by	The Statewide Planning and Research Cooperative System (SPARCS)
Primary Source of Data	Statewide Planning and Research Cooperative System (SPARCS); Universal Data Set (UDS)
Additional Information	The Annual Report includes disposition of patient information which is obtained from the Universal Data Set. It identifies the patient's destination or status upon discharge. The categories used in the report include home, another acute care hospital, skilled nursing facility, intermediate care facility, other institution, home health services, left against medical advice, psychiatric chronic care, and died.
Most Relevant Pages	Tables 1,5,6 and 16.
Topics	End-of-Life Care (Last year of life)
Sub-topics	Use of hospitalizations
Data Type(s)	Raw/Downloadable Data for offline use; 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	State(s): New York Counties: County data is available.
URL for Web Page	http://www.health.state.ny.us/statistics/sparcs/annual.htm

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

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

“Center to Advance Palliative Care” has 1 results below

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

A State-by-State Report Card on Access to Palliative Care in Our Nation’s Hospitals




	Record ID: 616

Presented by	Center to Advance Palliative Care
Primary Source of Data	National Palliative Care Research Center
Additional Information	This report examines geographic variations at the state level in order to assess whether seriously ill patients throughout the United States are receiving equitable care. Specifically, the report examines: Patient access to palliative care services in hospitals; Patient access to board-certified palliative medicine physicians; Medical student access to clinical training in palliative medicine; Physician access to specialty-level training in palliative medicine.
Most Relevant Pages	Tables 1 & 2 - pgs 36-39 of 44.
Topics	Healthcare Services Available
Sub-topics	# providers certified in palliative care; Hospitals (number, size, profit status, palliative care services)
Data Type(s)	Static (non-customizable) Data
Data Display(s)	Bar Graph; Map; Narrative; Table
Data Updates	Data describe one point in time
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.capc.org/reportcard/state-by-state-report-card.pd...

“Centers for Medicare & Medicaid Services - Research, Statistics, Data & Systems” has 1 results below

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

Medicare Hospice Data 1993 - 2007




	Record ID: 622

Presented by	U.S. Department of Health and Human Services
Primary Source of Data	Centers for Medicare and Medicaid Services
Additional Information	The Medicare and Medicaid Statistical Supplement includes charts and tables showing health expenditures for the entire U.S. population, characteristics of the covered populations, use of services, and expenditures under these programs. It is one of the most comprehensive sources of information available on health care finance in the U.S.
Most Relevant Pages	Table 8.1 -Number of Hospices, Number of Persons, Covered Days of Care, Total Charges, and Program Payments for Hospice Services Used by Medicare Beneficiaries: Calendar Years 1993-2007 Table 8.2 - Number of Persons, Covered Days of Care, Total Charges, and Program Payments for Hospice Services by Demographic Characteristics: Calendar Year 2007 Table 8.3 - Number of Hospices, Number of Persons, Covered Days of Care, Total Charges, and Program Payments for Hospice Services Used by Medicare Beneficiaries, by Area of Residence: Calendar Year 2007
Topics	Costs of Care; Demographics/Social Factors; End-of-Life Care (Last year of life)
Sub-topics	Age; Gender; Hospice costs in last year of life; Medicare costs in last year of life; Race/ethnic group; Use of hospice or other palliative care
Data Type(s)	Static (non-customizable) Data
Data Display(s)	Narrative; Table
Data Updates	Data are updated regularly
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.cms.hhs.gov/MedicareMedicaidStatSupp/LT/itemdetai...

“Compassion & Support at the End of Life” has 2 results below

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

A Report on Overall Employee Knowledge, Motivation, Behavioral Readiness and Self-reported Completion Rates Regarding Health Care Proxies and Living Wills




	Record ID: 601

Presented by	The Lifetime Healthcare Companies
Primary Source of Data	1993–2003, National Long Term Care Survey
Additional Information	The 2006 Employee Health Care Decisions Survey was sent to 4,111 Excellus Health Plan, Excellus Benefit Services and MedAmerica employees on July 26, 2006. 4097 received this survey electronically and 14 received paper copies. The 23 question survey focused on employee knowledge, motivation, behavioral readiness and self-reported completion rates regarding Health Care Proxies and Living Wills.
Topics	Individual involvement in healthcare
Sub-topics	Use of advance directives/ surrogates/ HC proxies
Data Type(s)	Static (non-customizable) Data
Data Display(s)	Bar Graph; Narrative
Data Updates	Data describe one point in time
Span of Years	Generally includes 3 or more years
Geographic Levels	State(s): New York
URL for Web Page	http://www.compassionandsupport.org/pdfs/research/2006_Emplo...

Rochester Community End-of-Life Survey Report, 2000




	Record ID: 602

Presented by	RIPA / Blue Cross End-Of-Life / Palliative Care Professional Advisory Committee
Primary Source of Data	Rochester Health Care Forum
Additional Information	This survey was directed to area hospitals, home care agencies, disease management programs, hospices, and skilled nursing facilities. The survey had eight questions about advance directives, DNR's, pain mgmt and use of hospice.
Topics	End-of-Life Care (Last year of life); Evaluated Outcomes and Quality of Care; Individual involvement in healthcare
Sub-topics	Pain and symptom management; Use of advance directives/ surrogates/ HC proxies; Use of hospice or other palliative care
Data Type(s)	Static (non-customizable) Data
Data Display(s)	Narrative
Data Updates	Data describe one point in time
Span of Years	Generally includes 1-2 years
Geographic Levels	State(s): New York
URL for Web Page	http://www.compassionandsupport.org/pdfs/about/Rochester%20C...

There are 57 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.